Tag: IVF

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Episode 80SN: An IVF Journey that includes repeated miscarriage…and pregnancy: Amy’s Story, Part II

This is a show that shares true experiences of pregnancy to help shift the common cultural narrative away from the glossy depictions of this enormous transition to a more realistic one.  It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka. I’m a writer and an economist and the mother of two girls. In this episode you’ll hear more advice about things to think about on your fertility/ivf/pregnancy journey–knowledge that just might make the often challenging process of fertility a little easier to bear (and maybe also things to help you to keep hold of a bit of your sanity, as her book title suggests) from the former writer who covered the “fertility beat”, before such a thing existed, for the New York Times. What follows is the second part of our conversation.

Fertility Statistics

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2014/03/female-age-related-fertility-decline

https://www.acog.org/womens-health/faqs/having-a-baby-after-age-35-how-aging-affects-fertility-and-pregnancy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8237340/

Tongue-Tie

https://www.mayoclinic.org/diseases-conditions/tongue-tie/symptoms-causes/syc-20378452

https://kidshealth.org/en/parents/tongue-tie.html

Audio Transcript:

Paulette: Hi, Welcome to war stories. This is a show that shares true experiences of pregnancy to help shift the common cultural narrative, away from the glossy depictions of this enormous transition to more realistic one. It also celebrates the incredible resilience and strength it takes to create another person and deliver them into the world. I’m your host, Paulette Kamenecka. I’m a writer and an economist and a mother of two girls. In this episode, you’ll hear more advice about things to think about on your fertility/IVF/pregnancy journey that just might make the often challenging process of fertility a little easier to bear, and might help you keep hold of your sanity in this process. This story comes to you from the former writer who covered the fertility of you before such a thing existed for The New York Times what follows is the second part of our conversation. 

Why is it so constricting of your time other than like the windows were like, Oh, we, I guess I don’t even know what the windows look like what?

 

Amy: So let’s say you have to go in on the first day and if you don’t know when you don’t know when you don’t know when you first see is you don’t know when you hit. You’re not supposed to be drinking. Usually I’m not a doctor and so I’m not giving any medical information but a lot of people don’t drink and let’s say don’t even do drive through or whatever they want to ruin their psychology. You know, marijuana can cause firm documents. So do not get in. Let’s say you go in the first day of your period and if you go the third day and the fourth day seven planets around your work, then you have to see how your body then you’re taking medicine to increase the egg while you’re doing an IUI or an IVF. Medicine so you don’t know how the medicine might keep you up at night. You might be sleeping, it might be bloated. Then you have to do a retrieval which is like a half a day off but you don’t know if you could go away you don’t know is there going to be on day 14 or 16 if I got am i doing a transfer my cancer the embryo back to me and am I gonna guess take it easy those days that I have to wait two weeks or a week and a half to find that out or not? And then I might be a little bit pregnant, and then I might be not pregnant. So I mean, I don’t even taking over your entire life.

 

P  2:32  

Yeah, yeah, that is dramatic. When I remember about my experiences that I felt judged not by my doctor, but by the process. The idea that as a woman you could or should be having babies and so it’s culturally reflected back to us in 100 different ways. And when your personal machinery to make that happen, they’d be feeling you. It’s hard to feel as though you’re doing something right. It almost felt like like a moral condemnation. Oh, you know what am I going to save my ovaries not working. You’re not fit to reproduce, or it just it felt very personal in a way that some issue with my with my appendix with them.

 

A  3:10  

I mean, I hope that the doctors are better now than they were then. You know, you’ve dealt with women at the clinic. But then you’re like on Facebook at a meeting about someone else. Oh, I only got 20 eggs and you’re like what I got three eggs. And then there’s that competition is rife with so much disappointment. Like once you’re the thing Oh, I only got 20 eggs and only kind of fertilized and only five minutes day three and the only one ready for transfer. So there’s just you know, this law of diminishing returns on your disappointment. But there is for anyone who can’t get pregnant right away. Just this notion that we all thought it would be easy, and it would be quick and it would be simple. There’s that whole disappointment of like my body’s failing me I’m not doing what I thought would be easy to do.

 

P  3:59  

As me suggests it would be super easy to get pregnant. idea that felt like a threat before I was ready to have kids and a taunt once I was ready and couldn’t get pregnant. But I don’t think that I did matches up with the numbers. So here’s some of the numbers. According to the American College of Obstetricians and Gynaecologists, also known as ACOG. You had your maximum number of oocytes or immature eggs when you were a 20 week old fetus, which was six to 7 million by your birth to down to one to 2 million. By puberty, you have 300,000 to 500,000 by age 37 with 25,000 and only 1000 By age 51. This is a sight on here but I thought this was pretty funny. I was telling my daughter about these numbers and she said that’s fine. It’s not like a little What 25,000 Is what I’m 37 So the issue with that is that not always xx will be chromosomally normal, otherwise known as euploid. Sperm mature over a period of about two months. Eggs mature over a period of decades. It sounds like there’s a lot of stops and starts they mature to a point and then they wait and then the next trigger happens and then they continue to ensure it’s not like these miniature eggs are active for the whole period. And it’s important this very long maturation process that scientists think contributes to the much higher rate of chromosomally abnormal eggs that’s firm. By the way, male fertility also declines with age but less predictably. The American Society of Reproductive Medicine reports that while women under 30 have about a 25% chance of getting pregnant naturally each cycle, that chance it drops to 20% for women over 30 Forget estimates by the American Society of Reproductive Medicine by 40 the chance of getting pregnant naturally each month. It’s just 5%

 

A  5:45  

you know, just like you need medical medical, you didn’t think you would, you know you just thought you’d get up at the doctor for when you’re pregnant. But you didn’t think like this basic bodily function is not you know, I think like a third of IVF patients are under 35. So it’s not a matter of needs a lot of young women going through this Ludhiana Linda. So it’s not like oh, I’m too old and I waited too long, but also like oh my god, I’m so young and all my friends are getting pregnant and I can’t that’s such a hard feeling.

 

P  6:16  

Yeah, that was definitely a hard feeling. It was definitely a hard feeling. But I agree with you that it this is like a cultural perception of what men expect your body to do and what it means if your body can’t do that. And it’s not necessarily accurate, right, your body can still do a million other things.

 

A  6:33  

I’m sure though people who have diseases might be mad at their body to you know, yes or no.

 

P  6:44  

So I’ve always been issues in cancer and I can, I can attest that at least in my experience, there is this sense of failure of like, how did I you know what did I do wrong to get to this spot, although that also and pregnancy are less than this. You don’t have that much control over your right. We imagine that we deal with but we don’t really

 

A  7:06  

  1. You know, right? You don’t know how your body’s going to deal with anything. In life. That’s the truth.

 

P  7:14  

So you did all that and had miscarriages and then he did, did you say nine cycles of IVF? Yeah. How many years does that take

 

A  7:29  

it was three years until I was pregnant with my daughter. So it was four years until I had my daughter because it wasn’t like once I had my daughter, I knew she was going to be my daughter for i for all intents and purposes, I was never sure she was going to be born either. You know, so that fourth year was brought during her pregnancy. Well, because pregnancy after it’s good after IVF but also after a miscarriage is very fraught like my doctor said to me, you’re not going to be happy until the baby is in your hands. Because I was like, why am I not happy? He’s like, because of what you’ve been through. Yeah, that’s,

 

P  8:07  

that’s a hard road. So did you enjoy the pregnancy at all? Were you able to?

 

A  8:12  

I think I had a moment in my second trimester. You know, there was a moment in my second trimester where I was like, we went on a baby man and everything but I think that I was very, a little bit dissociated from it. In the whole time like my heart we had a rule because we have a whole heartbeat monitor because like I would go to the doctor I would get everything would be great. And then by the next day, I was like, I don’t know if I you know, cancel a baby. So my husband we put a cap on it that I was allowed to check the heartbeat once a day on the home heartbeat monitor, and even that and my husband used to do the state, like you need cream to put it on the ultrasound jelly. And he was let me try it without jelly. And like I would still you know, I would still lose my mind in that moment before I felt the heartbeat. So when I was like nine months pregnant, and I was dealing with you know, at the end of June and July and everything I felt pregnant, but I never like allowed myself to leave in full for like I talked about this in the last chapter in my book about you know, pregnancy after miscarriage pregnancy together. IVF and there’s a school and this is you know, for everything. Electrification like Oh, I’m happy, you should be happy. And like, I hate the word. Like you shouldn’t be happy, okay, you know, my body. Don’t tell me how to be like, I’m nervous and I’m understandably nervous and I can’t be happy. You know? I’m sad that IVF and more repeat miscarriage do not ruins but robbed me of that experience of being you know, the happy go lucky. But that’s just what a lot of people have to go through.

 

P  10:05  

Yes, yeah. Amy talks about the complicated feelings that accompany pregnancy after repeated miscarriage. She writes that if you’re like me, and so many other women who grow to motherhood was as wealthy as a bouncy castle, you might not exactly have the pre pregnancy always dreamed up. You may no longer have the desire to post Tietze but in the oven gift on social media, have a gender reveal party with a pink or blue cake or endlessly debate baby needs. First of all, you might not want to do all of that sensitivity to all your friends who are still adding second, you might be too nervous. I myself have been pregnant so many times that at first I couldn’t believe this fifth pregnancy was the one that was going to stick. And then she writes with a heartbeat came relief but only momentarily. A few days later, I’m back to worrying again. After all I’ve heard a heartbeat once before and after this he ended it because I hadn’t been paying enough attention now I was paying attention to every swallow twinge flutter. always nervous while I wasn’t feeling anything in particular pregnancy was so so tense. Even when I pass the in utero blood test for major diseases and move into my second trimester. I still couldn’t relax. I couldn’t be happy not for longer than two minutes. I was having what I later realized was infertility PTSD. I can’t imagine you’d be any other way after your experience. Right? I mean, then

 

A  11:26  

people you never know. You know? Some people on IVF people are not. Well, some people like a pregnancy anyway. They hate every minute of it. They also have to deal with oh, why are you healthier? You should be happier. You don’t have happy hormones. It’s gonna ruin the baby. You know, almost expectation. It goes I mean for fertility people it goes farther back with like, oh, you should be happy for her. Why can’t you be happy for her? You know, your best friend’s pregnant your sister’s pregnant? Your brother in law’s pregnant and you should be happy for them. You know, it’s funny like in the last 10 years, so much has changed, like fertility has got better and more people have done it but sitting on all these Facebook groups, which didn’t exist when I was going through it, but like, it’s still the same emotional journey. You know, like people just complaining that their mother is yelling at them. They’re not acting happy for their sister. Or you know, things like that. It’s just an expectation about how we should feel is ridiculous. And I don’t know if you can explain it. You know, I always tell I always say that. I went through so much with infertility and still when I was pregnant and I had some that I kind of understood finally why other people want you like to share that joy. So I do it from both sides of the aisle. But we can’t expect anyone to like have feelings for us. They have their journey and we have Arthur.

 

P  12:50  

It is it is hugely complicated. And I remember going to the gynecology office when I wasn’t yet pregnant, surrounded by pregnant women, you know, waiting my turn to do the IUI or whatever, you know, just overwhelmed by the sense of like they’re making it look easy. A lot of pregnant people out there is this is true. You seems hard to me somehow.

 

A  13:11  

I mean, the nicest thing I always say this, my oldest friend was growing up. The nicest thing she said to me was she had four kids and her oldest was eight. So I had assumed she was like totally done. And I was trying to hear about something. And she said, Amy, I have to tell you something. I’m like I don’t know. And she said to me, I just need to tell you that I’m pregnant. And but you don’t have to be happy for me. I just want you to know that. This still makes me cry because I’m always like, that is the nicest thing anyone ever said. Like just letting you know, you don’t have to monitor your reactions for me like you could just be who you are.

 

P  13:48  

Yeah, I agree. I agree that I would imagine you feel seen when someone says yeah, because it is like a recognition of all the things that you’ve been hurt. Yeah, for sure. Amy has a chapter in her book about managing your feelings about other people’s pregnancy in the face of your infertility. I’m going to share another excerpt here. She writes, how culture can often perpetuate the myth that female friendships are Ride or Die through thick and thin Sex and the City girls etc. Reality lose friendships are rough, especially during life changes and extra especially when one of us is pregnant and one of us is not but desperately wants to give it to someone else to make room for their infertility feelings, or your pain or your fears for the future. And that’s a relationship where it’s safe. Because through the delivery of your daughter, I don’t know though. were you imagining you know, a water birth or you know, home birth or something like that,

 

A  14:44  

or what did that look like? You know, just it’s funny so I had all dated during my journey I went and all these alternative journeys as well. Like I went to baby healer who told me I had locked maternal energy. I went to the

 

P  14:59  

stop right there. So I’ve been to a Reiki healer as well. What do you think? Were in the moment where you’re like, Oh, this feels better?

 

A  15:07  

What was your reaction? I think I went twice so it must. I can’t What did I think I thought okay, I’ll try it like to think that I have very bad association with motherhood given my own family history, and I don’t have a good energy for motherhood and I have to connect to like the positive energy for motherhood.

 

P  15:33  

super interesting.

 

A  15:35  

Probably not really relevant to my journey. You know what I mean? Like it’s it didn’t solve any of my issue.

 

P  15:43  

Okay, totally interesting. So let’s go through that. I’m totally interested in the that once the conventional things don’t work, all you have left is to try all the alternative.

 

A  15:51  

Exactly. So I went to I went to the Jewish ritual bath, which many religious women go to every month after their

 

P  15:58  

bed. And what’s the what’s the theory behind that?

 

A  16:01  

Why is that supposed to help? Well, religious women go through actually something that’s very good for fertility basically, I don’t know if people know this. But they are not allowed to have the week of their paid and a few days after. So they’re basically abstaining from sex for the first 12 They’re basically having sex in the most fertile window. Their cycle if their cycle is normal and not normal, then they have a lot of trouble. So they could have the ritual bout themselves. There wasn’t something I was ever planning on doing. So some people go there and they say, they blessings and everything like that. And I just, you know, it’s one of the things I was doing making that kind of thing I was there. But one of the things I did after the Reiki healer, which was you know, not only it was also try to picture the picture, you know, lying on the table Q hospital scene of the woman screaming in pain, I mean, I always knew I was gonna have drive like after my journey, I’m like I but I always try to picture labor and kind of picture picture picture. I was like my, you know, law of attraction moment like picture giving birth. And it didn’t happen that way. Because the closer we got to Brenda, I was 40 What I really wanted and I was trying to avoid a C section at 40 weeks. My repeat miscarriage specialist by Amy I really liked you to know you’ve been through. I’d really like you to give birth. I was like just getting you to 41 He wasn’t even my, my maternal fetal medicine doctor. He’s like, he’s like, you can’t have 41 Like you work too hard to get here. So I just was like, No, my dad is going to come out. She’s going to come out now that I know her. And I know that she’d leave like her father all the time. And I think I sat in there for 14 So 14 and a half years. And at that point, I realized that you know, despite all my imagery of radicals, neighbors, friends, I was kind of like on the fence. I was like, I just like I don’t care their way of doing. I know what happened. When we started. We did the epidural, and they said that the baby was not taller. It wasn’t like an emergency C section. They just said she wasn’t tolerating it very well. So we’re gonna move into a C section. And I crazy. In the last month of my pregnancy, I had this crazy itchiness and it wasn’t due to any. Sometimes it has to do with like a liver problem, but I was just like praying for the baby. That’s when they gave me an epidural. I was like dying from fussiness and they gave me this massive dose of Benadryl. That’s kind of out of it. For the C section. There’s a little bit out of it, and I haven’t C section and my plan was not followed at all. I was still mad and my husband didn’t. I want I didn’t want her to be. I wanted her to have her right away. I’m still kind of upset about that. But I was on the fence at that point. I wasn’t going to ask for like a scheduled C section but I was like to do it.

 

P  19:17  

And so they did the C section and then they you get the time with the baby on your chest and how did you feel when you actually had her in your arms?

 

A  19:27  

I was super out of it because it was Benadryl. I was happy. It was beautiful. It was like it at NYU downtown overlooking the water. Like we had that picture. It wasn’t like oh my god, I finally have the baby. My whole infertility journey was over. I can just relax now it took a while. You know, and I don’t know I don’t know how like a woman who wants to be home. I feel like I don’t know. I don’t have anything to compare to but there’s definitely like, I was definitely more nervous and I think if I would have just had a baby, like just straight. You know, I was like, nervous. I was always checking if she was awake. I was checking her heartbeat monitor and I know that a lot of newcomers. But I was that’s not my personality. It definitely is fertility made me a lot more overbearing and nervous than I would have been. And I think that there was like, you know, and then, of course you know, it’s so funny like when you’re not fighting but like when you ran a marathon. Then after the race you like, you want to have your medal, you know, and then you can relax. But after we have the baby, you’re like your baby breastfeeding and everything else that comes with it. So it wasn’t like you have time to go and do things like the first six months. I think it wasn’t like I didn’t have trouble bonding with her. But I don’t think I felt like I can release that breath. It took me a while to be separate even while figuring out breastfeeding, which is like the second part of the world after infertility.

 

P  20:57  

Well, you took four years to wind you up. So I can’t imagine you round down you know, immediately so that totally makes sense to me. And the extra attentiveness once the baby’s born also makes sense given that IVF kind of opens this, like pull the curtain back to show you what it looks like when things don’t go well. Medically. Right. Which is

 

A  21:20  

right, correct for a lot

 

P  21:21  

of us because we’re relatively young and we have kids. You haven’t seen that before. And it is a little bit shocking, right?

 

A  21:28  

I mean, I think I read a statistic that many women never send in the hospitals giving birth. Yeah. And I think I was also one of those people who just believe everything’s going to work out. I mean, I moved to New York City at 39. I moved to the Upper West Side and I met my husband. So that’s takes a kind of optimism that make the fire.

 

P  21:50  

That’s awesome. And so it sounds like the fourth trimester for you was challenging like it is for a lot of people. Yes. Did you get the hang of breastfeeding or how did all that

 

A  22:00  

go? No, I had to have my daughter’s tongue tied. Because she was I was pumping. I was explicitly pumping and she was not getting anything out. And then finally lactation consultants told me to, you know, get her time steps.

 

P  22:20  

According to the Mayo Clinic, tongue tie is a condition in which an unusually short thick or tight band of tissue connects the bottom of the tip of the tongue to the floor of the mouth, which restricts the 10s range of motion. Although doctors don’t know why it happens, they know what happens during fetal development. If a newborn has tongue tie, it can make it difficult to stick out their tongue and it may or if you’re breastfeeding, sometimes tongue tie might not be a problem. And sometimes it requires a simple surgical procedure, like the one we described, where the doctor clips the tissue to free the top. That tissue doesn’t have many nerve endings or blood vessels. So often this procedure is carried out in the doctor’s office without anesthesia and babies younger than three months old. And so and you said now she’s seven and a half. Oh, wow. What she is who? She does her singing

 

A  23:11  

damn fan talking and arthropathy Yeah, so she’s nonstop talker.

 

P  23:19  

That’s cute. Is that is that a run in your family? I guess. Like sometimes

 

A  23:27  

I was on. I don’t I don’t know if I mentioned this, but on my have the BBI with integrating High Courts of immune suppressive drugs. I don’t know if you are. But I can move on. Very high dose of prednisone steroid that is controversial, but you know and it makes you crazy. So I always joke I was like I was the steroids but she’s so like, everything is amazing. Everything with our daughter like a 10 She’s on either amazing or horrible traffic.

 

P  23:58  

That is super cute. So I’m actually a weird outlier. I love Britain. So I’ve been on a bunch of times. And it is the kind of thing where like, you never get tired,

 

A  24:07  

never feel tired. It’s like, sometimes you wish I was like, oh I can be but right now.

 

P  24:15  

Totally. But that’s amazing. She sounds horrible.

 

A  24:17  

Yeah, she’s great. And she just we just got it together.

 

P  24:24  

Wow, that’s fun. So I bet you have a lot of advice for younger you. But if you could give your younger self advice what what do you think you would focus on?

 

A  24:36  

Well, if I would give any young women not only young women, young self, but just any young woman is I you know, we all know so much about our politics and our finances and I just wish that we knew more about our body. And you know, people would say Oh, do you think every woman should freeze their eggs? I’m like, I don’t care if people and I don’t care if they even have children. Norma, I just like in their late 20s. I want them to know about their body and they want them to know if they have people that might be if they have no period they want them to know that might be PCOS. They want you know, I speak to so many women in their late 30s When a lot of these things interfere. I just want everyone to be educated. And I think what happens is there’s so much going on in the world and there’s so much to be worried about. I think, you know, young women who don’t have a partner or don’t know if they want to don’t even think about it they don’t even look and they’re like I’ll deal with that only up I just want every author and every woman even men know your family history. Like I didn’t find out until who knows when that my brother had blood circulation issues. Hello blood circulation issues are gonna affect me as well. You know, I just want people to know whether I just want everyone to make an informed decision and have all the information just the way you would about like buying the house or just not that information like demands that were female empowerment.

 

P  26:03  

Yeah, it is. It is amazing. And I think a lot of us, myself included, learn a lot on a pregnancy journey. Well, when things don’t go well and when things do Right, exactly. We have not prepared to do it earlier. If I would give advice

 

A  26:16  

for anyone who’s having fertility issues and also just this is a finite moments in your life. It feels like it’s gonna last forever, but it’s not going to last forever. So like, you know, you know, even though I had that picture in my mind of having the baby on the table, and I didn’t have it the way I wanted, and you might not have the kid the way you know, but you might not have it the way you think you’re gonna have. You’re gonna get that in school, but you know, some one way or another.

 

P  26:43  

Yeah, I think that’s good advice. It is a useful perspective because for sure when you’re in it, there’s nothing else. Right, it’s very hard to look up. Well, thanks so much for coming on and sharing your story and your book called The trying game is available all over obviously. All over Amazon but

 

A  27:00  

any bookstore. Yeah. Actually, if you like the sound of my voice, I’m actually narrating the audible version.

 

P  27:09  

Oh, that’s that’s awesome. And you have a website people can go to to find your other writing. Yeah, you can go to

 

A  27:21  

trial, but that calm and I have lots of articles on fertility, health, parenting,

 

P  27:30  

things like that. Okay, that sounds great. Thanks so much. Thank you. I look forward to it. Thanks again to Amy for sharing more about and really appreciate conversations with women in which they share their actual experience. Our goods in general Warren, Washington.

 

You IBM, we’re also hashtag grateful for everything we fought for. You do not discuss our mixed feelings. I’m not talking about the feeling of being scared shitless the excitement and terror that comes from knowing I’m talking about the leftover infertility of the past, mixed in with the cost of child labor. She writes. I think it took me a few weeks to feel that unfair joy. Sure. I was recovering from major surgery and trying to exclusively breastfeed the second world after 70 to subsist on negative sleep to entertain every form family member by myself. I couldn’t relax. I understand she was here to stay that she was mine. Mama, exactly. Receptionist would say a few times before I understood that she was talking to me. I am the mama. Yes, I ran into check on the every five video monitor. Meanwhile, I was outside. The only ones because I was also still running for my feelings like I had during fertility. I was still unable to relax the Brotherhood. Did I fear of the baby not waking up one morning I was overwhelmed but my fears this year to see what another day with her would bring. An early read was crowded out. And finally going through infertility as they be more sensitive to others. Because I remember what it was. I don’t remember every HCG data. Every embryo counts every medical protocol. But I do remember the the desolation of not having a child having a child this child this wonderful, beautiful, adorable person. There were so many dark days. I never thought I would get here. I didn’t know whether I would recover from a pregnancy loss. I didn’t know that I could start fertility takes away from uproot my life move across the world with just the world getting pregnant and moving on without being who was denied the one thing I wanted. I did not know what the settlement was together. Yet. Here we are with our curly girl in a mermaid bathing suit flopping around with a fish. Most days the gratitude has to go against me to college and I have to just pretend to be a regular thanks so much for listening. Hope you enjoyed this episode. Feel free to like and subscribe. I will be back next week with another inspiring story.



 

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Episode 68SN: One Woman’s Experience with Recurrent Miscarriage: Eileen’s Story, Part I

 In today’s episode, my guests challenge is with miscarriage. She has two miscarriages both at the end of the first trimester, and then uses IVF (despite the fact that getting pregnant isn’t the issue)…and get’s pregnant, and has a miscarriage….eventually she becomes the mother of two girls, but that’s later in the story. She is a writer, and in one of her pieces about this topic  called On Fertility in Toast magazine she writes: When you give birth, you do it with others. When you miscarry, you do it alone. Even if doctors and nurses are present, numbing you, holding your hand, giving gentle instructions, they’re not with you, because what’s happening is both too awful, and too common, to be shared. Nobody wants co-ownership of the failed human. Many don’t even consider it human.

Even if your father is driving you to the hospital in his buttery yellow Lincoln, or even if your mother is riding in the ambulance with you, or even if you husband and sister are outside the procedure room waiting, you’re still alone. There was a person/being/cluster of cells that was alive inside you, and now it’s not. Times three. It happened when I was 31, 33, and 38.

I’ll stop reading there and you can hear my guest describe her experience…our conversation is broken into two parts. In this first part I also spoke with a doctor whose specialty is recurrent miscarriage and he shares insights from his own research and experience.

To find Eileen’s writing in The Toast, go here

To find Dr. Kutteh’s paper on a new algorithm for recurrent miscarriage, go here

Audio Transcript

Paulette: Hi welcome to war stories from the womb. I’m your host Paulette kamenecka. Im an economist and a writer and the mother of two girls.  In today’s episode, my guests challenge is with miscarriage. She has two miscarriages both at the end of the first trimester, and then uses IVF (despite the fact that getting pregnant isn’t the issue)…and get’s pregnant, and has a miscarriage….eventually she becomes the mother of two girls, but that’s later in the story. She is a writer, and in one of her pieces about this topic called On Fertility in Toast magazine she writes: 

When you give birth, you do it with others. When you miscarry, you do it alone. Even if doctors and nurses are present, numbing you, holding your hand, giving gentle instructions, they’re not with you, because what’s happening is both too awful, and too common, to be shared. Nobody wants co-ownership of the failed human. Many don’t even consider it human.

Even if your father is driving you to the hospital in his buttery yellow Lincoln, or even if your mother is riding in the ambulance with you, or even if you husband and sister are outside the procedure room waiting, you’re still alone. There was a person/being/cluster of cells that was alive inside you, and now it’s not. Times three. It happened when I was 31, 33, and 38.

I’ll stop reading there and you can hear my guest describe her experience…our conversation is broken into two parts. In this first part I also spoke with a doctor whose specialty is recurrent miscarriage and he shares insights from his own research and experience.

Let’s get to this inspiring story…

P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?

Eileen: My name is Eileen favorite. And I’m from Chicago, Illinois.

P: Nice. Excellent. So Eileen, we’re going to talk about the family that you have created. But sometimes the family you’ve created is a reflection in some ways of the family you came from. So I’m just wondering, did you grow up with siblings? Did you know you wanted to have a family what what’s your background like in those in those respects?

E: I grew up with siblings. I grew up with eight siblings. Wow. I I’m the number eight of nine. So yes, I always anticipated that I would have children and I have two girls.

P: Wow, that’s amazing. eight of nine is amazing. So imagining you all are pretty close in age.

E: Yes. My mother had the first four in four years. And then I don’t know, after that every two years so there were nine of us born in 13 years. 

P: God that’s like an amazing accomplishment to be to be honest. Wow. So we all know that’s hard work.

E: Right. So she my mother was 24 when she had her first and 37 when she had her last.

P: Wow. Okay, so that led to you thinking you definitely wanted the family. Did you want a large family? 

E: No. 

P: Okay. Okay. Probably also related right to your experience

E: more just you know, the financial realities of a huge family definitely shifted over time. You know, it was much everything was a little bit cheaper when my parents were coming up right homeownership education, all that good stuff. So I knew that for me that would not be in the game in the cards.

P: So let’s talk about your family then. Before you got pregnant. What did you imagine that would be like?

E: Well, so I have five sisters. So I pretty much watched all my sisters have babies from the time I was 13. I had my first nephew Wow. So I was always around kids, little kids being kids, you know, always so I don’t feel like I had any kind of illusions about it. Having been an adult so young, and then having much my sisters have babies and see their struggles and see their happiness. 

P: And so you didn’t imagine that you weren’t necessarily walking into some easy process.

E: No, no. No, I knew what it was like my sister had her first baby when she was 21. So you know, she was young. She got married young, she was you know, I was so I was babysitting at 14, you know, and she and her husband wanted to go out and parties, you know, so like, I was watching pretty young babies from a young age.

P: Wow, that’s good training, actually. 

E: Yeah, 

P: so was it easy to get pregnant the first time well,

E: so you know, my story is that it took me 10 years of infertility and miscarriages before I had a baby. So my my first pregnancy was like, Hey, let’s try to get pregnant and yeah, we got pregnant right away, but then I miscarried. So that was when I was 31. And then it was two years before I got pregnant again, at 33. And then I miscarried again, and then I didn’t get it.

P: Wait, let me let me stop you right there for a second. So at this point, then now what’s our view? I have one miscarriage and for the next pregnancy, I was, you know, on DEF CON two for the whole thing. Yeah, I’m wondering if you took it the same way or you thought this is a process and this is how it works?

E: Oh, no, they were. They were devastating for me. The miscarriages were really hard and really unexpected too because as you can hear I come from this very fertile background. My mother had nine children. She was one of 10 herself. Wow. And my grandmother was an Irish immigrant. And she came from like a family of 10 in Ireland, you know, so like I come from this long line of hyper fertile women. Yeah, so I never expected it to be a problem for me.

P: I brought this question about genetics and fertility to an expert.Today, we’re lucky to have Dr. William Kutteh. On the show. He’s the director of fertility associates of Memphis and board certified and reproductive endocrinology and infertility. Thanks so much for coming on the show. 

Dr. Kutteh: Thank you. 

P: Before we get into the specifics, Eileen’s mother and grandmother are both from really large families like 10 kids. I mean, herself is one of eight kids. And she was saying that she expected because she comes from what she described as a hyper fertile line that she would have kids easily wondering, is is a hyper fertilized thing or is fertility has no basis in genetics or how do we think about that?

Dr. Kutteh: That’s an interesting that’s an interesting point. Many people think that what are super fertile meaning that their problem is not they can get pregnant if they can easily get pregnant.

Issues then the study is what to do different about her family, and in many cases was this concept of uterine receptivity, how receptive is the embryo and neuter and selectivity. So in a normal, fertile woman who’s not having miscarriages?  She has a selection mechanism. In the years that allows computers to discriminate between the normal embryos that may be genetically abnormal. And if the embryos genetically abnormal in individual, normal reproductive potential, like her mother, then in most cases, we believe that that abnormal embryo never attached. She would not get pregnant. And next month, maybe a good embryo come along, she would get pregnant. In case of some women, I don’t know about this. Because this is all research and there’s not a test. I can draw blood or do a sample or whatever. We think that something about that selective mechanism of the uterus to discriminate between an abnormal and a normal embryo is altered in a way that uterus no longer is capable of doing a good job of saying is this going to be a medically normal, or is this going to be an abnormal embryo? And it can’t discern. So, you know, reproduction is complicated. There’s a lot of waste along the way. There’s a lot of duplicity. There’s a lot of excess on your test sperm A man may have millions and millions of sperm. Thanks for one fertilized the same thing, women that have hundreds of 1000s of eggs at birth, and they may have two three or four children typically. So the selectivity years in this individual that male say it was super fertile. It can grab the embryo, its ability to select out that embryo that’s normal, abnormal, is weak or under functioning or not not working well. And therefore the uterus holds on the embryos that normally would never attached. There’s another screening mechanism in a woman’s reproductive system that looks at that India when it’s a quarter of an inch and a half an inch in size 6,7,8,9 weeks for most miscarriages curve, and somehow we don’t understand somehow says this one, there’s this genetic problem or that genetic problem. And therefore, we’re going to shut down all maternal support to this particular pregnancy and we call that a mystery. So this is an individual’s this may be what was going on. She’s still able to produce eggs, they’re still able to get pregnant they’re still able to get to the uterus and attach and start knowing that that selective mechanism, which embryo implants in which, somehow

  

Eileen: so yeah, so it was really tough after the first one, and then, you know, I kind of got into that, you know, I think women go through infertility, you go through this sort of like, let’s try to get pregnant and then all the kind of rigmarole of like sex on timing and temperatures and your legs up the wall and all of that stuff. And after a while, that would get really a strain, you know, on the marriage. So, I would we would sort of go through like, let’s just stop trying, you know, with scare quotes, stop trying, you know, because it was sort of like even a verb itself is an action, that it has an underlying sort of feeling of desperation about it. And so you kind of let it go and then I got pregnant again, in the middle of graduate school, but how, and then I miscarried again. So at that point, I was, yeah, I was 33. In the summer between my MFA. I’d gotten one year down and I was going into my second year, and then I miscarried over the summer and then it was really five years before I got pregnant again.

P: So after the second one, do doctors say okay, if you’ve had two miscarriages, we need to look at X, Y, and Z.

E: Nope. It’s all falls under that. This is so common, and it happens to lots of women and the percentages whatever I think the percentages are like 25% of pregnancies end in miscarriage. So and I didn’t have tests to see, you know, the chromosomal test. Well, that to say my second miscarriage happened in Ireland. So you know, it was I was on vacation, so like it really wasn’t even discussed the idea of like doing a chromosome test.

P: One thing about Eileen’s case is that after she experienced her second miscarriage, there weren’t any tests run to determine what was the issue, and she was basically told that it’s common to miscarry. What’s the standard of care for recurrent miscarriage now?

Dr. Kutteh: The last dozen years or so there’s been a emphasis particularly from arboreta knowledge, that when a woman has an experience, whether she passes, whether she has medically induced passes or that tissue surgically collected, that it should be sent for genetic testing and the reason is not necessarily that he’s going to change any medical treatment that we do. It changes the way we think about that history. And hopefully the way that that individual patient or her partner, think about that mystery,

P: It makes sense to get tested in one of your papers you described all the things that can contribute to miscarriage. Does the testing involve the genetic testing of the products of the miscarriage or it’s everything

Dr. Kutteh: no society has been recommending that I have heard that the American Society of Reproductive Medicine was revising their guidelines. And in medicine, as I said, it may take eight to 10 years before changes, impact appear. To be is reasonable care for patients, like one of the factors also showed a study that prospective study on your 100 patients where we did all the guideline test and we did the test on the miscarriage. We tried to figure out what’s the most cost effective and beneficial and what will be less than those to answer. And when you add that medic question on the miscarriage to the standard, recommended gobbling effect now, we can give an answer to about 90% of people. There’s no more so sorry that bad luck kind of thing. We don’t understand what’s going on. You can give them a pretty good idea of what’s happened. Then we always can fix it, but at least we can say what it is and what our chances are in the future.

Eileen: Then five years went by without getting pregnant again. And I decided to try fertility treatments. So I went through I went through a round of IVF I got pregnant and then I miscarried again.

P: So did the miscarriages happen at the same point?

E: Pretty much yeah, pretty much like around nine somewhere between the nine to 11 weeks. Point always in the first trimester, which tends to be a chromosomal issue, right? Okay. So on this, I’m the third one. I said, Look, I want to cry, I want to test you know, I want to see what went wrong. And so sure enough, there was it was Trisomy 16. So there was an extra chromosome or allele or whatever. So that was sort of comforting. Knowing that’s what it was because I think for a lot of women when you have this really, you know, there’s a lot of like self blame like what did I do wrong? Did I drink coffee? Did I you know, have too much stress did that you know like and then you realize like that really helped me realize like, the problem happened at conception. Really, really small kind of microscopic level when I have absolutely no control and and that that sort of really helped.

P: Yeah, I think the truth of it is, for the most part, we don’t have much control at all over any of the pregnancy. So the idea that it’s your fault, I think is based on this belief that I could have done something different because I control this process in my body when really you’re not controlling any of it.

E: Right. Oh, you know, and it was really funny because when I got pregnant, again to talk a little bit about space between so I had I had another miscarriage I was 38 and I think by the time I turned 14, I was like ready to accept, like, I’m not going to be a mother. You know, like, this is not in the cards for me. I made my peace with that. And I think it’s really I want to be really careful when I talk about something like that because I feel like a lot of women who mystery get told you just need to relax. You just ate and then you get pregnant and again, this idea of control around but also like us sort of faulting the mother for being too anxious or something to get pregnant. You know, like

P: It’s you It’s your anxiety. That’s right. Yeah, yeah. 

E: So I really want to I really want to like express that like I did deep. But I don’t want to prescribe that path toward fertility. Because I think that’s really a dangerous thing to say to any woman. And like I don’t want anyone to like say that but I can say that, like in myself. I had reconciled it. You know, it was 10 years. Yeah, years of trying to get pregnant. I was like, I’m kind of done with this thing that’s just not working.

P: And in the end, the whole process is stressful. We had a lot of trouble getting pregnant and I remember like once the sex becomes work yeah, you’ve stripped away kind of the fun, and it’s now it’s just stressful. You’re in it for an outcome. And that’s, that kind of takes some of the joy out of it for sure.

E: Right. And so like I just, I’m a yogi, so I’ve been practicing yoga for a long time. And so like I really I really saw that like mind body connection. And I really believe in that mind body connection. At the same time. I don’t want to say that like it’s something you can just will yourself to have, like it has to be a deep conversion within the self. And no one should tell anybody else. Just that though, you know, but I will say that I did deeply let go when I turned 40 And I was just like, that’s okay, I’m gonna be able to do other things with my life, yada yada. And that’s when I got pregnant. What was really interesting was during that first trimester so I’m I’m a I’m a professor, so I was teaching one night. I was you know, very early in the pregnancy, maybe about 1011 weeks, and I went to the bathroom on the break, and I was bleeding. And I was like, Okay, I’ll tell you what’s also funny. At the same time, my sister was pregnant. My sister was two years older than I am. And so she was she was even older than I was. She was 42. I was 40. It was pretty much going through and she was six months pregnant. And when I told her that I was pregnant, I said okay, let’s just get ready because I’m gonna miscarry when you have your baby. So let’s just, let’s just get ready for that, you know? Like, let’s just, she was like, whatever you need to say, sister, you know, whatever. You know, whatever. Whatever makes you feel like yep. So let’s just say that’s going to happen. And so I called her that night and I said, I’m spotting. And she was like, okay, and I said, this is totally out of my hands. Either there’s the right number of chromosomes, or there is right yeah, 

P: yeah. 

E: And, and I really, I really believed that finally, you know, I really believe like, this is completely out of my hands. If this is going wrong. It’s nothing I did. It happened 11 weeks ago with sperm egg. And that’s all we have to do. So I went the next morning, I went to see my doctor, and we are going to start crying. And he gives me the old ultrasound wand, you know, because I’ve had been through so many, you know, three really horrible ultrasound, and he was like, we’ve got a heartbeat and I could not believe it. You know, I was like, and he goes if you’ve got a heartbeat that’s strong at this point. That’s probably going to work.

P: Wow. Oh my god. One thing I want to say about the miscarriages which are super painful, kind of amazing that your body can distinguish what’s going on chemistry is saying, Oh, this this sperm combination will not develop into a person. Yeah. And that in itself is like unbelievably cool wisdom that you can’t control.

E: No, you can’t control it. You know,

P: I mean, when I miscarried, I was doing a lot of computer programming at the time. And so that’s the way I thought of it is like, Oh, my body has figured out that this is not going to go to some endpoint. So it’s and that to me was a little bit comforting because I was doing this programming and you know, you get this error, you know, obnoxious beep and error message every time your code wasn’t working. I love it. And so, like that helped me get through to say, you know, this is kind of like

E: you’re articulating something. I think that’s really important for people to remember is that every room is going to encounter this experience in a different way. And they’re going to find comfort in all these different ways. And some people they might find it like, well, it was God’s will or it might be something else, you know, might be well, data error. Yeah, like not the right chromosome number, you know, whatever. But like we have to make space for like, all the different responses and like give voice to them. Yeah, because the culture hates to talk about miscarriage and, and people said the wrong thing to me because they didn’t know what to say. 

P: Yeah, yeah. I think people don’t know what to do with those sad feelings, right? Or how to talk about loss and for sure, I was upset and disappointed but in our you know, singular journey was a big deal to have gotten pregnant. And so we kind of held on to that.

E: Yeah, and I think for me, it was kind of weird to because I had didn’t have any problem getting pregnant. Pregnant, so I resisted, like fertility treatments for a long time because of that. And then when I turned 38 I was like, Alright, I better at least try this IVF because I don’t want to look back and regret it. Yeah. And then after I miscarried after one IVF round, which is horrible. I think I think that was worse, you know, and I mean, because you go through all the needles in the shots and that’s and all this stuff and like the fertility doctor was just like rooting for me, you know? And then, and then I went through another round, and I didn’t get pregnant. And I think that maybe contributed to just be like, okay, you know what I mean? Like, I think I in my head, I said, Look, I’d rather never be pregnant again. Then go through another miscarriage.

P: Yeah, it’s just it’s so much more complicated than we are willing to admit or thinking.

E: I was speaking with a friend of mine who just had a miscarriage a couple of months ago, and she was just like, it’s really hard to get pregnant. You know, she’s like, there’s only like this really small window every month. You know, the timing has to be just perfect. Yeah. Like, I know, it is really small when you start breaking it down and trying. 

P: Yeah, it’s just, it’s kind of a miracle that it even happens, you know, around 

E: Yep, I agree. Luck has such a huge it’s such a huge player in the whole process. Yeah, I feel Yeah, I mean, that was kind of what I came down to in the end. I just sort of went you know, I’ve just, I just had bad luck. Like, you know, like, up until that point, I was like, I’m just on the bad side of the of the odds. Yeah, yeah. Like bearing the brunt of the odds for all the women you know, like because I’m very you know, like, I’m, I’m like, oh, for three and, you know, that’s, I’m not gonna do the math right. But you’re, you know, I’m saying represent our miscarriages that I’m miscarrying more, carry my share. 

P: So how common would you say do we have real statistics on how common miscarriages

Dr. Kutteh: recurrent miscarriage?  Yes. So it’s a hard study to do because you need to, if you asked me how many patients every year we did a study when I was in Dallas at Parkland Hospital, it’s a non referred population. patient demographics are roughly a third Hispanic, Caucasian, a third African American, and at that time, there were 15 or 16,000 deliveries performed in that hospital every year. Now it’s and went through the database and found how many women had been diagnosed with recurrent miscarriage when I presented the hospital as about 1.5%. Now, that has to be an underestimate because everybody might not come back to that same facility for indigent patients that were saved for that hospital because as I say, less than baseline, if you look at all the other types of studies and literature is probably two three or 4% of all reproductive age couples will experience frequent mistakes your patient for example,  

her pregnancies and standard losses. This is the same with the same, some people said in a baby and we were supposed to see this and say this is normal. 

P: And you pass the 10 week mark in a heartbeat and then what’s our pregnancy like?

E: It was great. I had a really easy pregnancy. I don’t have any I mean, no, not really very little sickness. No, I never. I never had any sickness or nausea, fatigue, you know, no. Weight gain, no, nothing. It was perfect.

P: What were you imagining for the birth?

E: My second miscarriage was in Ireland. And so if you read the essay that I wrote about fertility, which was The Toast, it kind of goes into the blow by blow of that miscarriage but it was pretty traumatic. And I went into labor, basically a mini labor that’s what they call it in Ireland, mini labor, where I was just doing the abortion. It was it was brutal. I’m a writer. So like, as I was going through that, I told myself, I’m going to remember how steals and I remember that it was like, I’d have this like, pounding in my back and then just you know, a flood of tissue. And you know, and so, when I went into birth, right labor, so two things I went through initial childbirth classes and the regular childbirth class, and because I had to write so I gave birth at Northwestern British Women’s Hospital at Northwestern. And so before you could do natural childbirth class, you had to do traditional childbirth class. So I was in that and the whole traditional childbirth class was about epidurals. Yeah. And when you get home and wet, you know, and Pitocin and now it’s kind of like, okay, wait a second. You’re telling me that when I get an epidural, I can’t eat. I can’t walk around, and I won’t feel my leg. I’m thinking, how am I supposed to give birth if I can’t feel my legs? Yeah, I can’t feel my body below the waist. How do you possibly give birth so that was my logic. I know. And I know some women love epidurals so like No, no judgement, but like in my logical Virgo brain, I was like, that doesn’t make any sense. Right? So then I did the National Child Birth class. And they said, the best thing you can do is come to the hospital as late as possible. So and the other thing that I did through my yoga studio was I found an incredible doula. So when I went into labor, I called my Doula whose name is story. And, you know, she came to the house and she was also a massage therapist. So like for every contraction, I got a massage.

P: That’s awesome.

E: So it’s just like in what I was noticing it was that stab in the back feeling that I knew. Yeah. That I had already survived. Yeah. And in my brain, I’m thinking I can get that stab in the back and actually get a baby out of this. No problem. Yeah, you know, so I think like for me, compared to most women going into labor there was that pain fear factor was not as strong because I had been through that other experience with the kind of the catastrophic result of no baby. So I just really migraine I was just like, You know what I can I can take any of this if I get to be at the end. So story came and it was like, Okay, I think we’re, I’m writing down the, you know, the differences, the timing of the contractions, how many how many minutes? How many, you know, and I’m like, I think I’m ready to go to the hospital. I think I’m ready to go and she’s like we’re like up all night and she was ready to just go lie down on the bed for a little while. So she knew like because my my contractions were like kind of all over. They had hit a certain rapidity and so it’s now Thanksgiving morning, you know, Thursday morning at five. Dory and my husband I were off lying on the queen size bed and my labor completely stops, just stops. And so she’s like, okay, you know, I’m gonna go home call me if it starts up again. So she’s like, just walk around and just wait, you know, so I was ready to go the hospital around five in the morning on November 23. And then she talked me out of it. She really talked me out of it, which was great. And so then the whole rest of the next day, I just kind of hung out, walked around, but I didn’t want to go to Thanksgiving dinner. at my mom’s house. I just found had that whole like, feeling that 

P: Yeah, yeah. 

E: And then around eight o’clock that night, the contraction started again. You know, pretty rapid. I called Dory came and basically labored in my living room with her for, I don’t know, maybe three hours, so does your For, I don’t know, maybe three hours. 

P: So does your water break at this point or no water? 

E: Because that’s funny. So, so, so she’s giving me massages. And in she said to me this amazing thing she said, Okay, they know what he’s visualizing right now, like when you’re in when you’re when the contractions are coming in. So I used to live in Southern California, so I was like, Oh, I’m imagining like, you know, diving under the wave, right? You know, I like the waves coming in. So I’m like in my mind of a contraction, just dive in under the way and she said, I hate to tell you this. But in order for your labor to advance you have to stop diving under the wave. You have to let the wave come through you. And I was like, Oh, no. And so that whole idea of the mind body connection told me that like, I was actually keeping myself from progressing. Yeah, my brain was like, I was saving myself. I was keeping my cervix from opening through my own like Jedi mind tricks. So but the way she put it was like, it just I got it, you know, and so then the next contractions that came I didn’t die, you know, and I sort of like let that power come through, you know, and so what’s the what’s the visual now are you getting hit by the wave? Was really felt like the power went came up from below the earth and like, straight through me, like straight up my middle and like, open my cervix, you know, and she enjoys it. I’ve never seen anybody turn labor around that fast. It’s amazing. I know. It’s super amazing. So next thing, you know, and she’s like, Oh, we better get to the hospital right? Because like I

So, I’m in the backseat of the car and on all fours and I’m just like, moaning you know, just like it was really kind of fun. You know? Like, it was just like really letting it all hang out. You know how long a drive is, is are we in for like, 20 minutes? No one is it it’s in. It’s like 10 or 11 at night in the city. So it was Thanksgiving night, so there was like, no traffic. So I’m moaning. We’re going down Lakeshore drive my husband just like flooring it, and then we get to Northwestern. And I’m just like, You know what I loved about it was like, I had no modesty. I was just like, I don’t care moanin I don’t care like whatever. And so we get to triage and they’re like, You’re nine centimeters. 

P: Oh my god. Oh my god. 

E: So they put me on the gurney or whatever. We really into the elevator. Wait, let me ask you a question here. Are you Are you sensing that the waves are getting higher or whatever the whatever the image is, I don’t know what the heck, you know what I mean? Like, I don’t know what it was. I was just like, I was like very mammalian. Let’s just say it was very. I was totally my animal body. So then they really into the elevator and my water breaks  all over, and I was like Take That!

P:  I’m going to end this episode right here, with Eileen very much in labor, with her husband newly surrounded by amniotic fluid. Next Friday the 21st we’ll air the rest of our conversation. 

It’s impossible to listen to Eileen’s story and Dr. Kutteh’s experience and not be awed by the complexity of the project of growing another person. One other statistic that I wanted to add from Dr. Kutteh’s 2020 paper in Current Opinion in Obstetrics and Gynecology that blew me away: and I quote It is appropriate to remember that human reproduc- tion is an extremely inefficient process. Approxi- mately 70% of human conceptions never achieve viability, and nearly 50% spontaneously fade before ever being noticed [21,22]. Spontaneous miscarriage is ultimately the most common complication of pregnancy.

thanks for listening

we’ll be back next week with the rest of Eileen’s story.

 

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Episode 47 SN: A Dilemma of What to Do with Frozen Embryos: Nicole’s story

If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate. 

You can find Nicole’s piece about this experience, Very Nice Blastocysts, here

Audio Transcript

Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer and the mother of two girls.

If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate.  

After we spoke I interviewed a reproductive endocrinologist from Yale, who also happens to have used IVF technology for her own pregnancy.  Although this is a very personal decision, She has some insight into the process and the difficult question of what to do with frozen embryos.

Let’s get to this story.

P:  Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from? 

 

Nicole: Yeah, I’m Nicole graves Lipson, and I live right outside of Boston in Brookline, Massachusetts. 

 

P: Nice. Lovely. So sometimes in thinking about the families we create, it’s useful to think about the families we’ve come from. So Nicole, do you have any siblings? 

 

N: I do I have one brother. Yeah. 

 

P: And growing up to do you think I’m definitely having a family or I want to recreate this or

 

N: I always knew that I wanted to have a family and have children. I don’t think it was in a intense active way. But when I envisioned my future, family and children were always in it. 

 

P: Okay. Let’s get to the family then. Do you have two kids? 

 

N: I have Three, 

 

P: three kids. Okay. Yes. So was it easy to get pregnant? 

 

N: It was not at all easy to get pregnant. My husband and I were married for six years before we had our first child. I had assumed as I think a lot of women assume but it would once we decided to have a child that would be in a year, year and a half. or so before we would get pregnant at the most. And that did not pan out. And so we pretty quickly realized that we needed to turn to fertility treatments and assisted reproduction to help us out with our first 

 

P: so let me ask you about that before we get into that even more. We needed help as well. And I found that kind of shocking and awkward. And you know, once you invite more people into the process of creating a baby, it’s just it’s just not what we were kind of fed growing up. Right. That’s not your image of baby making. Were you equally kind of taken aback by that or did you just you thought this is Thank God this is here. 

 

N: I was taken aback by it. I think I think what was hard for me about it wasn’t so much that there was a stigma around it or anything like this. It was the feeling that for so many things in my life as a kind of driven, ambitious person. I’ve been able to control outcomes. If I worked hard enough, if I focused I could make a lot of the things that I wanted to happen happen. And it was hard for me to come to terms with the fact that there was nothing that my brain could do to help my husband and I create a baby. 

 

P: Oh, totally. And we briefly talked before we started taping about uncertainty. I have the exact same mindset and I thought well, I will just work super hard to make it happen. Yeah, that’s how it works. Right? Although I have come to reflect on that idea as naive. And maybe my sense of my control over all those things was less complete than I thought it was in the moment. 

 

N: Yeah, I think it’s really hard. To let go of that tendency. 

 

P: Yeah, 

 

N: I would still think about it all the time while I was going through the process, not only because there are elements of it that just make it very consuming, whether it’s yourself medications, or things like this, but I think I still had that feeling of if I put brainpower to this you know, if I think about it enough, you know, if I read enough online forums, you know if I know enough about this, if I do the process well enough meaning, you know if I give myself that injection, not at the no one at night or similar 659 But exactly at seven o’clock so I think it is really hard to give give up that control. Another that you’re doing in assisted reproduction. You are you are handing over control of this process to to medicine 

 

P: to someone else, right. You’re giving me a flashback of our I remember myself in a room practicing the injections on an orange did you have to do that? 

 

N: Oh, sounds actually familiar. And now that you know, you say it, I might have done that as well. A universal thing? 

 

P: Yeah, yeah. Okay, so So you realize you need help and what does that look like and how does that go? 

 

N: Doing some research and finding out you know, different well regarded fertility clinics here in my area that are many in the Boston area? 

 

P: Yeah. 

 

N: And so we were lucky in that regard, and then having a consultation with a couple people and going with the doctor who we felt comfortable with and and who we felt we would have a good shot with. 

 

P: you Did IVF right?

 

N:  Wasn’t that your before our first child? We did IUI. We did three rounds of uterine insemination and the third was successful. That’s it. 

 

P: That’s what I did you and that’s pretty gentle in terms of art, right? I imagined that I’d walk in there and they’d have like a turkey baster. Which is how they’re filling you with with the materials of life. 

 

N: Yeah. I think the hardest part of that experience for me was that on one of the inseminations there was like a good teaching hospital that I did. There were like, six residents in the room. Like one of them actually did the procedure and I was like, I’m not so sure about this. There you go again, with right like handing over control. 

 

P: Yes and uncertainty. For sure. I’ve definitely been in the teaching hospital setting where I’ve thought I mean, I should just sell tickets. I feel like I’m getting used here. So the first one is a success and how is that pregnancy 

 

N: that pregnancy we might end up working? We might end up going off on a tangent here at that pregnancy, with the exception of nausea. I was nauseous at the beginning of all of my pregnancies was wonderful until week. 28. I want to say when I went in for a routine ultrasound, and it was determined that my cervix was shortening which you might know means often that you’re near labor, put on immediate bedrest, so as I’m bedrest for you know, modified bed rest at home for many weeks until I got to be in my you know, 30 Something pregnant and 36 weeks pregnant or something like this and nothing had changed in my cervix and my my OB was like, this just must be your body’s physiology. And so I ended up being induced at 40 weeks after all of that. Oh, I think you’ve got you’ve talked about the rest of the show. I mean, that’s a whole other. 

 

P: It’s useful to know it’s so widespread.

 

N: It’s so widespread. I mean, I wrote about this in one of my other pieces, actually, I think that the turning to that as an option. is not something that would happen if men gave birth. I was the head of the English department at my school and I, one day I was the head of the department the next day, I was on my couch and you know, like 

 

P; crazy. 

 

N: Yeah, there’s a lot there. Like the assumption is is that somebody else is managing the finances somebody else is able to provide if there’s other children, you know, it’s yeah, there’s a lot a lot. 

 

P: that’s crazy. So you bed rest for a while and then how’s the delivery? 

 

N: That was all great. I agreed. 

 

P: Okay, good. So then how long between the first and the second? So I started to try to get pregnant again. I’m born with a second child like two years apart. That was our ideal. So I started to try to get pregnant in probably when my my first child was like 18 months or so. And, you know, I think we tried naturally for a while and but we didn’t want that to go on too long. And then we sort of marched through the different levels of intervention, right? So first, we did Clomid, and then we did IUI and eventually our fertility doctors suggested it was probably time to move on to IVF for this one. So that is what we did. Yeah.

 

P: and IVF is an entire project as I understand it. 

 

N: Yeah, at the beginning, it’s quite like IUI what you went through where you are injecting yourself with a follicle stimulating hormone over a series of weeks and then so you have to go into the clinic for regular ultrasounds to measure the size of the follicles, the egg follicles and how they’re growing and get regular blood tests to measure your estradiol levels. And so it is involved in the sense that you are making regular visits to your clinic or hospital for these interventions. 

 

And then it’s just obviously a lot of mental, a lot of mental energy. A lot is hinging during those weeks on, you know, the the call you get from the nurse at the clinic in the afternoon telling you how the follicles are growing or how many there are. I think the thing about the IVF process or or or really any intervention, fertility intervention I think is how it takes up so much space in your brain when you are going through it. I think that’s, to me that was harder than the actual injection of the shots or, or all of this it was how the sort of fixation on how things were going, how things were going to turn out sort of eclipsed the other things going on in my life at that time. That was hard.

 

P: Well, you are given a window into how intricate and complicated this process actually is. Because if you don’t get pregnant just by having sex one night then then that process is broken down into 45 separate steps where now you have all these other things to focus on and will the cells divide and what will they look like and you are being forced to examine and focus on all these details that you otherwise took for granted? What does not agree it seems understandable if that’s how it would go I remember waiting for the call. And when I was waiting for the call, I guess it was on like the edge of cell phones. So not everyone had a cell phone so you had to be home. 

 

N: Right? 

 

P: impossible to imagine. Now I can totally relate to how hard each and every step is, especially as we talked about with your interest in controlling things that you’ve previously controlled in. Your life and now it’s in someone else’s hands and I’m not sure about you, but I felt really responsible for all my numbers. Like all these numbers are being produced by my body even though I can’t do anything to change the FSH control 

 

N: that really resonates with me what you just said and I think there’s so much about fertility and childbirth and motherhood, especially early motherhood. For me there were so many things about it that made me feel for the first time that my body’s involuntary functionings were reflection of one moral character in some way like you know whether or not you can produce a baby easily whether or not you can breastfeed, right? No woman has any choice over whether or not breastfeeding comes easily for her or not. And yet in our culture, there seems to be such like a value just to health value placed on breastfeeding your infant but almost a moral value right and so it becomes this like morally laden thing. Can my breast produce breast milk for my child can I can I create a wonderful latch you know, between my child and me, these involuntary functionings that we don’t think about otherwise suddenly carry this moral ethical weight. 

 

P; yeah, those feelings are totally familiar, but it sounds like in this case the IVF works. 

 

N: the IVF works. Yes. And the first the first round of IVF work so we were very lucky in that regard. Yeah. 

 

P: And then the leash gets longer after the first trimester because now you’re freed from the fertility people. 

 

N: Yeah, absolutely freed from the fertility people. And just regular pregnant woman at this point. Yeah. 

 

P: how does that pregnancy go. 

 

N: Hey, I really loved being pregnant. I loved being pregnant. All three times that I eventually ended up pregnant. 

 

P: I’m glad that went smoothly. I read a piece that you wrote. It’s called 

 

N: very nice blastocyst, 

 

P: a very nice, very nice blastocyst. Is that with reference to the third pregnancy? Or where’s that in the lineup? 

 

N: That’s reference to the second pregnancy. 

 

P: Okay. So let’s talk about that because that was a beautiful piece that you wrote, In case and in it, you’re sort of contemplating what to do with the other embryos, right? 

 

N: Right. So what happened in that IVF cycle? 

 

P: To give a little background on a typical IVF cycle, I got in touch with a reproductive endocrinologist today, we are lucky enough to have Dr. Tanya Glenn a reproductive endocrinologist from Yale on you have a clinical practice and you’re an instructor at Yale as well. Is that right?

 

Dr. Glenn: clinical instructor The third year fellow, so I’m still in training, and we’ll be graduating in about four months.

 

P: Oh, exciting. Congratulations. Thank you. Thanks so much for coming on the show. Can you give us a quick walk through what the process is? Just so people who have you know exactly what’s happening

 

Dr. Glenn: so to IVF is when patients will take their medication determines what that means is there are natural hormones where your brain tells your ovaries each month and a patient that’s having regular monthly cycles to grow an egg, and usually our bodies when they can, okay. And in this case, we take over that brain to ovary signal by giving them hormones that they take through an injection. And this instead of just saying grow one egg, I’m telling the body girl lots of eggs. And then when they get enough large eggs, we call them follicles at that point because eggs are microscopic so I can’t see eggs themselves by say I see the home that they live in. And as the egg gets more mature, the home gets bigger. And so once that follicle gets to a certain size, we give them what we call a trigger shot. This kind of mimics our body’s natural hormone rush that causes the body to ovulate or release the egg then approximately 36 hours later, we do a procedure called an egg retrieval that includes a transvaginal ultrasound with a little needle in the end, or we actually go into the ovary and suck out the follicles or the eggs under ultrasound guidance. We would then give those eggs to the embryology lab. And let’s say someone is has a male partner or using donor sperm. And in that case, we would expose the eggs to the sperm. And then you know, watch them fertilize in the lab and then usually grow them to day five, sometimes day three if they’re lesser quality. At that point at day five, they’re called a blastocyst and a blastocyst can either be transferred back to a patient she desires to get pregnant in that cycle, or we freeze everything? And especially with patients who have let’s say a couple like they don’t just have one embryo they have five or six that say they want one place back but now with these other five, they’re going to freeze them. It’s called process called vitrification, which is Latin for making glass and they can transfer them in another cycle. And the purpose of that too, is that we know even for patients with you know less than 35 so peak fertility is actually in the mid 20s. But we can really see it go down at 35. And so even patients younger than 35, we only see about a 55% chance for live birth each time that you place an embryo back, so it’s not 100%. So it’s nice to have those I say something reserved in the bank. And so we know that the live birth rate after about three embryo transfers one each time is about 90%

 

N: I think I had 14 eggs that were extracted at the end of that cycle, maybe five or six fertilized normally and the doctors picked the very best two and this is interesting. I learned that embryos are graded like diamonds, it’s a similar grading system that diamonds have like clarity color. There’s a very similar grading system for embryos and so I from us process we had two beautiful sparkling high quality diamond embryos and so two of those were been implanted in my uterus and and that’s determined based on your your age and an algorithm you know, how old are you? How likely are you to have multiple babies? I would have welcomed twins if that had happened but it did not only one of the embryos implanted and that embryo turned into my son, who is now eight. 

 

P: That’s sort of amazing and you’re talking about feeling judged based on what your body does and but you’re literally your eggs are being judged. They’re like, 

 

N: Oh, I’m proud of my diamond embryos. Like it’s like my husband and I produce these diamonds. Absolutely. Like you’re sitting there I remember sitting on the on the hospital table with like the paper sheet over me being shown this photograph of the two embryos and Doctor explaining to me what made them so perfect. And you know, I was just I had, like my first glimmer of maternal pride in these little creatures that might become a child of mine. So, yes, and and then what they do is they they continue to let the remaining embryos that are in that petri dish, their cells continue to multiply and they watch them and the ones that continue to live on which means that they are in the strongest condition have the best hope of you know ever developing further they freeze and so after our IVF cycle, we had three frozen embryos left over should we ever want to use. 

 

P: So that becomes a little bit of a tricky question, right? What do you do with the embryos which I feels like it’s weighty? 

 

N: Yeah, so that’s the question that I explore in my essay, very nice blastocyst. Anyone who has had a child knows how all consuming it is to have an infant. And so you know, for for the first few months to a year of my son’s life. I’m breastfeeding I you know, I have his older sister at that point is a toddler age three. And so I’m a busy lady, with a lot going on, and not something I ever really thought about, you know, the embryos at that point. They were, you know, the IVF wasn’t that far behind us. You know, there wasn’t any question because my baby was so young that I was going to have another child anytime soon. Nor did my husband and I know if we wanted to have another child that was not something that we had planned for or discussed. We very much knew that. We wanted two children and not one we were very hopeful that we could have a second child after our first but beyond that, and never more children had never been a big factor in our thinking our planning we’d never gotten further mentally than into 

 

P: Yeah, and I can see because I also did not get pregnant easily. I know the drive and the focus, to make the babies and have it work. And that kind of overrides everything. So you don’t necessarily think about what’s going to happen to those embryos. You know, you’re so excited that you get pregnant when you’re when you get the call and you are pregnant and it’s going to work and you’re so focused on that. And so seemed like in your essay, you were saying that issue of these frozen embryos occupied a space in the back of your mind pretty continuously and sort of what to do with them. 

 

N: Right. So again, the saying earlier, the fixation on successful that getting a baby is so strong and so overwhelming. That I think it it pushes your brain away or pushed my brain away. I can say from thinking about other things, anything tangential and a future fallout from this experience. I wasn’t thinking about oh you know, is this going to be harmful to my ovaries in the long run to be stimulating them this way? Because I didn’t care. I just wanted this baby. You know, I didn’t care if you know there was heightened risk for ovarian cancer. I wanted this baby. 

 

P: people who use assisted system in production are pretty focused on getting pregnant. History really do we know if there are any long term consequences?

 

Dr Glenn: That’s a great question. I think that overall there has been some information looking at specific or mentally responsive cancers like breast cancer and IVF and one paper I know that I reviewed recently looked at maybe if there is a slight increase it was a Danish conference study that there might be a slight increased risk of breast cancer within the short amount of follow up time. However, when you looked at the risk, it was point 9% of the population versus 1.1% of the population. If there wasn’t a difference. It was incremental. I always have a caveat as well as that this is looking at a very homogenous population. It was a Danish cohort, how much does it apply to our own patients? And so there has been a certain studies looking at that if you look at something like egg donors, you know, we limit it to six cycles and so and it was actually not for the potential for increased risk for cancer, because looking at the increase of cumulative risk of doing something like stimulating your ovaries and going for an egg retrieval. So overall, it’s a risk for any kind of complications from an egg retrieval day. infection, bleeding damage to certain structures like your bowel and bladder is like less than point 1%. However, when you look at someone doing repetitive cycles over time that increases and so we just want to make sure we protect everyone. But overall it is it is a safe procedure. They take the each individual and say what are their risks and benefits knowing their history?

 

N: The same way did I know that there was a likelihood that my IVF cycle would result in frozen embryos? Yes, my husband and I were given among all the many piles of paperwork you have to sign when you when you do IVF there’s a form we had to sign even before embarking on IVF about storing frozen embryos because the clinic would store those in their own facility for up to three years. But beyond that, if you didn’t want them to be destroyed at that point, they would need to transfer them to an outside cryogenic facility. So all of this required paper work in advance and the clue to the fact that I just wasn’t giving them this topic. The brainspace that I probably should have before I embarked on IVF is that those papers I found those papers unsigned and unreturned after the IVF cycles, so there was something about those papers. You know, I remember reading them and thinking this is crazy. How can I be signing papers about genetic material that doesn’t exist that might not ever exist? Decisions for possible future genetic material and where I’m going to store it and it just seemed, it’s it was daunting paperwork and there was something almost like speculative about it. It just it was I didn’t want to look at it. I didn’t want to face it. I didn’t want to think about it. And I didn’t. 

 

P: Yeah, I mean, it almost seems overconfident to be like, where are you going to stash this haul? Like I don’t have anything yet. Right? 

 

N: Exactly. Like are you kidding me? I just want to have a baby. I don’t want to think about this doesn’t this doesn’t relate to me. And so obviously wasn’t a deliberate omission not to sign the papers, but I did find them unsigned later in my folder of IVF records. 

 

P: So one thing I wondered when I read your essay, because I don’t think you mentioned it to have this issue weigh on you. Do you have to think that those embryos are a life is that what is holding you up because I I’m not sure if I think of them as a life or not in the context of the abortion debate. Which is so polarizing and kind of flattens the arguments that can be made. I would say this is not a life… solely my opinion, and because I had so much trouble getting pregnant and with the pregnancies, the intricacy of all the things that have to happen. To turn that tiny ball of cells into a person gives me distance from them. 

 

N: Yeah, but I wonder what your feelings are about all that. I mean, maybe I’ll talk about the essay to get it that what was so interesting to me about going through this process, I’ll backtrack and I’ll just explain the predicament. I found myself. So after our son, you know was when he’s around two or so, you know, my husband and I did start to discuss are we done having babies, you know, do we want to have another baby and we weren’t sure. But the fact that we had these embryos felt like a strong nudge towards having another child I felt if we were on the fence for various reasons that it was that factor that tipped me over into wanting a third child. So we actually disagree with it. 

 

P: Let me stop you there. For a second is it that you went through this difficult procedure to get the embryos and so and so you should use them or it’s that these embryos represent a life and we should realize its potential? 

 

N: So little bit something in the in the middle, I think, 

 

P: Okay,

 

N: I think if we were just deciding whether to have a third child without factors, the embryos being involved, it would be a decision that had no if we decided not to have a third child. That decision would have no impact on anyone whatsoever. Only us right. But the fact that there were these embryos suddenly meant that that decision carried a lot more weight than it otherwise would have. We would actively have to do something not to have a third child. We would actively have to make the decision to destroy these embryos to not use them. Right and I do not think that embryos are life. Do think of them and this is where as a mother the issue became complicated for me. Our potential 

 

P: Yeah, agreed

 

N: they are read intial life. And so there is something very hard about letting go of potential. And I think especially if you’re a parent trained, you know to to love potential to look for potential to want to nurture potential. And so that was the meaning that these embryos started to take on for me and since we were on the fence about having a third child, I said I’ve got that nudged us towards yes having one. But then something happened to make things complicated, which is that once they got the process, going reconnected with our clinic, made an appointment for a baseline ultrasound, which is when they look at a do an ultrasound of your uterus to just see where it stands and what would need to be on what hormones would need to I would need to take to prepare the lining of my uterus for the implantation of one of those embryos.  once we’ve made all of those moves I got pregnant naturally.

 

P: of course you did…that’s how it works

 

N: which itself was a very wild experience after having worked very, very, very, very hard for my other two pregnancies to simply have a late period, have that moment of wondering, going buy the CVS and now on my way home from work, pee on the stick and be pregnant was like, writing my essay that it was as if all of a sudden somebody told me that my fingers could spin gold like that my body could do this was totally shocking and disorienting and wonderful.

 

P: especially when you see behind the curtain right now you understand the thing. Everything is amazing.

 

N: Absolutely. So that was wonderful and and that pregnancy went well and resulted in our in our daughter, but it did leave us then with this again, but the question of these embryos,

 

P: but I’m imagining it’s a slightly different question. Now that you have three kids right. Then you have to take into consideration the other three, right it’s

 

N: it was a pretty much out of the question. We were not going to have a fourth child for for many reasons. It’s just not feasible for our family. It was not something that we thought would be best for our family and so that left us with these embryos. And what my essay explores is sort of my shifting orientation to these embryos over the years because the truth is, I could not bring myself to make the call to our clinic to have them destroyed. And so their existence is something that I ignored that I I sort of willfully ignored for a long time. And you know, there would be moments when you know, I would think to myself, I can’t believe that I call myself a full grown adult when I am not taking responsibility for these embryos and making the choice to to have them destroy because I’m a writer, but it’s not hard to imagine like some of the like Apocalypse apocalyptic visions of like embryos out there in the world. And basically, I’d ceded all responsibility for our genetic material or potential, our potential but this potential that we’re responsible for to total strangers in a lab somewhere a couple miles from our house, but it’s a because it is so hidden and because these embryos are frozen in the they are unseen, right is what it is. They’re not a reality that you need to confront every day, right? You need to confront the reality of your children every day. You know, you need to prepare the meals you need to deal with whatever struggles and hardships come their way you need to attend to them but the embryos it’s very easy not to and truthfully way that I’ve since learned because I don’t know a whole lot about this at all, but the way that fertility clinics, deal with them. Also makes them sort of quite easy to ignore, because clinics are not particularly this. I shouldn’t speak for all clinics. I can speak for ours but my understanding is that this is pretty universal. They are not aggressive about getting their patients to make decisions about what to do with the embryos. I knew that that they were still at our original clinic I had never signed any papers authorizing them to be transferred anywhere. I you know, did wonder on occasion if they had been destroyed without my knowledge since they had been there longer than the three years. I did, you know, one day email our clinic because you know, and I write this and they they essay it wasn’t because I had some sort of resolve or I had come up with some sort of decision about them but I just I wanted to know if they were still actually around. Or if they had been destroyed. You know, there was a very lovely receptionist on the phone in the lab who basically was like, oh, no, they’re here if you want to transfer them. You just have to sign this paperwork. 

 

And there was nothing urgent about it, you know, whatsoever. And so it’s one of those like decisions that indecision that ends up happening because there’s no particular moment where anyone is putting a paper in front of you saying like this has to get done or else my relationship with these embryos began to take on almost strange, magical tenor and what I mean by that is no at first I sort of thought of them as a as Life rafts. I’m going to knock wood as I say this, but like God forbid should anything ever happen to our children there. There would be despair, there would be anguish, but there would be these embryos right so we could rebuild a biological family if tragedy befell ours. And then that over the years began to dissipate a little because you know my husband and I are getting older and as we got further and further from the baby stage, my my my youngest is now six returning to the baby stage seems it almost is harder and harder. Right? Like we are

 

P: totally understand what you’re saying by this kind of insurance policy. At the same time, my guess is I don’t know whether you’d be able to bridge that loss.

 

N: Yeah. t’s magical thinking and then it became more magical because it sort of more from like, well, these are sort of like an insurance policy to almost like superstition. If I destroy these embryos, something terrible is going to happen to my family. So there’s all of this kind of magical thinking bound up in them. You know, it’s just such an interesting juxtaposition when you think about like the rigid science that actually that actually created these embryos and then the the meanings that they that they take on and you know, during the IVF process, you know, as I said, I was fixated on the process resulting in a baby but the sort of thinking that I can do about these embryos now without that kind of urgent desire mixed in is I think about generations that came before my husband and me and our families. I think about all of the history in in that DNA, right? I think about I’ve read about in the essay, you know, my ancestors who my ancestors on my father’s side who escaped pogroms in Eastern Europe and you know, went through all sorts of turmoil to make it to the United States, right, and then lived in tenements Lower East Side and, you know, thinking about my grandmother and all of the fate and escapes that needed to take place for those embryos that are frozen to exist. And so all of these sort of meanings started to accrue and attach themselves to these embryos over the years. In a way that I never ever could have seen.

 

P: Once you start thinking about it as a family line, then there’s no way to extricate yourself from those from those embryos, right? You really only have like four choices, have them yourself, which you’re not going to do destroy them. Give them the science for experimentation, or give them to someone else to have that baby giving the embryos to someone else as a form of adoption. I interviewed a woman I think in episode five or six, who did just that she and her husband went through IVF had twins and decided they didn’t want to have more children. And they found families who wanted kids but for whom IVF was prohibitively expensive, and they donated them.

 

N: I mean, I think that that is incredible. I admire this woman. 

 

P: Yeah, totally.

 

N:  I understand. I see the beauty in that. Gesture. I myself personally could not do that. It would feel and this is where that word line the web in life and non life comes in. it would feel to me like giving away my living children in a way to be raised by total strangers. Obviously not quite so extreme. I have a relationship with my living children, but not so far from the same. 

 

P: Yeah, 

 

N: I don’t know what kind of parents these people would be. I don’t know what kind of circumstances you know, they would would put my child and so that didn’t feel comfortable to me. The science research part didn’t feel comfortable because you know, I think I read in my case like science for whose purpose you know, you don’t have any say in what we’re what purpose is, are. Are these embryos being used. And so that vagueness was a discomfort to me. And so I can’t say that I was or am proud of my feelings about these things.

 

P: Well, they, they just are right, they just

 

N: they just are. I often wish you know that I could think of these embryos. As you know, like biopsy tissue or something right, like disposable, you know, useful for scientific purposes. And I think there are people who who can who do think of them way

 

P: this is obviously a really fraught issue and that I brought to Dr. Glenn so Nicole and her partner can’t be alone in this quandary about what to do with frozen embryos. Does your clinic offer counseling or what do we tell people? 

 

Dr. Glenn: You know, I don’t think specific kills like that for our clinics for this topic, but it’s something that I talk to patients about during their IVF and then before they sign it is like, you know, these are the different parts you need me to discuss or you know, you alone, you determine that. And so they have questions, of course, as part of the conversation about like, next step. So when you do it, to be honest, we have less patients that kind of go forward on this part. And I think, kind of like you said, the initial part is I just want to know what to do next, and I just need to keep going. I think that most patients don’t think about that until later on

 

 And unfortunately, I think that this is a personal struggle that they sometimes don’t reach out for, they don’t look at as your decision is such a personal decision. So they talk to their friends, family. Or they talk to other people who have gone through IVF 

 

I went through IVF twice and so that’s also something that you know, you look at it you’re like cheese Wow, this is intense, because not only putting something that you feel is yours and special in this kind of box of three check box do and destroy. Do you want to donate to another person? Or do you want to donate research? And it’s weird to like go from something is very personal just to these three checkbox. And it’s also very finite on your life. It’s like what if something happens to you? What if something happens to your partner, if you have a partner, it’s a struggle for some of our patients to that they decide not to freeze embryos, they actually freeze eggs and sperm separately and then only inseminate one or two at a time. And so in other countries, it’s also illegal to freeze embryos. So in Italy can’t do embryo freezing you can only do egg and sperm.

 

 

N: Potential, you know, that always trips me up the potential that is bound up in them. So I you know, I’ve been thinking a lot and I tried to explore this in the essay about what it means to mother, right? What does it mean to when you think of mothering a child, as I mentioned before, it’s so much of what we love, right? Or what you think about is like nurturing potential growing potential. But what I started to think about as well is how much of mothering how much of parenthood is also about letting go and about seeing your children’s limits? At times and coming to accept you know, what isn’t going to be right like a child is born and it seems like they’re this blank slate and the sky’s the limit and they can be anything and do anything and they think anyone who you know has children in any you know, element for a preschool or elementary school age seems like, you know, there are things that that you need to let go of as a parent and things that your child will not ever be and maybe that’s not disappointing to you, but it’s disappointing to them or maybe in some way it is disappointing to you, but letting go and accepting what isn’t going to be or what shouldn’t be, I think is also a big part of parenting of mothering. So that is ultimately you know, what is what has helped me move forward in my embryo journey.

 

P: So would you say you’re at the end of the embryo journey are we’re still they’re still in limbo.

 

N: It’s still in limbo. I’m still in limbo. But I know the answer. I do know that. The answer is that I have to destroy these embryos, but I haven’t done it.

 

P: I mean, I don’t know if it gives you any comfort to imagine that no matter what you do, there’ll be regret. Because there’s no perfect answer here. Right. But while you’re talking, I’m thinking, why would I would probably donate them to science and then I can literally feel the regret of making that choice. And I don’t have any eggs and I haven’t made that choice. But there’s nothing here except having all the children which is not going to happen right for for almost everyone who goes through IVF that is not what the goal is to have all these have all these children and it’s a little bit of a mismatch between what interventional fertility can do and what our lives look like. 

 

And so maybe there’s some point in the future where they can better estimate which eggs will survive and which eggs will produce and they’ll take fewer and they’ll make fewer embryos and then we won’t have this dilemma because you won’t, I mean, you’re not going to be sad about an egg because you’re shedding eggs every month, right? So that’s a thing. Right? But right now we’re in this mismatch where we can’t I mean, it’s a little bit like everyone who goes through IVF The doctor has to choose how many embryos to put in there within your uterus, which is a wild decision that nature doesn’t force you to make in that way, right? You don’t have access to five embryos.

 

N: Right. Yeah. It is. I think it is a really interesting question because, you know, that I thought about while writing this pieces, would it have made a difference if my fertility doctor had said to me right now is the point in the journey when we’re going to talk about planning for frozen embryos? And yeah, you know, and thinking about that and I want you to be fully aware, you know, that this is a quandary that many parents face afterwards. And I don’t know maybe that would have led me to ask more questions about how many follicles that we’re trying to harvest. I’m not sure, but I don’t know, things might have changed, and maybe those conversations are part of the process now, but they weren’t when I was going through IVF. So it was sort of an unspoken aspect of the of the process.

 

P: I mean, I think IVF sheds some light on how little we know about many of the intricacies of this process. Even if you do IVF as you know, you don’t get pregnant every time.

 

N: Right. Oh, and totally and also you’re not so at the mercy of the knowledge of these doctors, right? Like, are you say that I expect if I have, you know, 13 follicles great like, let’s do it, like, produce 13 follicles. 

 

P: I asked Dr. Glenn. She can imagine a future in which we can grade egg and sperm so well that we know exactly what we need to use to get an embryo that will successfully lead to pregnancy.

 

Dr. Glenn: The problem is the attrition rate. I talked to this when patients are freezing eggs for future use. Is like well, how many eggs do I need and someone that triggered over 80% live birth rate of less than 35 year old would need to freeze 16 eggs? Not every egg survives a freeze thaw process not every egg gets fertilized. Not every fertilized egg makes it to day five. So freezing embryos is a better guarantee that you get embryos out of it.

 

P: Do you think there’s a time in the future where we will be able to identify markers on the egg to know which ones will freeze and which ones won’t? Or which ones will fertilize 

 

Dr. Glenn: future? Who knows right? I’m always impressed about what when I’m an embryology Lab. I’m always impressed but they can do. They also can look at a little bit if they’re doing a procedure called ICSI which is intracytoplasmic sperm injection. If there’s a problem with male factor or problem with the sperm, then they actually can take us in each individual sperm and injected into the egg. When they do that. They have to kind of clean up the egg a little bit. When they clean up the egg. They do get an idea of how good the egg looks and so they kind of grade them that way in our lab, but I’m sure in the future they’ll be able to look at the egg and kind of determine better about potential for how many fertilized and quality and those are our struggles right now is that we have a very limited view of quality you know, we can kind of determine quantity of how many is called ovarian reserve or how many eggs a woman has left that we have very limited achievement of is quality. likely they are to get pregnant with a successful healthy baby. And so there’s so much unknown out there. But it’s also hard because this is an ethical quandary about working with someone’s eggs, sperm or embryo 

 

P: and there’s no way before you make that decision to know whether it would have been viable like thought and let it grow a couple more days and see

 

Dr. Glenn: so a couple more days wouldn’t help or even Nestle work because the lab can only grow embryos to certain points of time and you don’t know until you put an embryo back whether or not it’s going to be good or not personal experience when I did my IVF cycle a few years ago after embryos get to day five, the embryologist looks under the microscope and grades them on how good they look very specific criteria about what’s called Hope Spanner they are embryos actually have a little protein shell kind of like an egg and they hatch out. So they look at that how thin it is how it doesn’t look like it’s going to hatch out and attach to a uterus. Then they look at two things that trophectoderm in the inner cell mass the trophectoderm comes the placenta and the inner cell mass becomes the embryo. They grade them and how good they look. And again there’s very strict criteria.

 

I had almost perfect looking at embryo with fabulous. I had a negative pregnancy test 

 

P: wow so that just means it didn’t attach or do you know what that means? There’s like they

 

Dr. Glenn: just did not attach or if it it tells you it was not good of quality. And there’s other things besides the embryo there’s a signals between the embryo and the uterus. Is a uterus being receptive at that time. Did it not you know get to that point. The and the uterus called Pina bogs and attached appropriately with the cytokines and the protein than amino acids just a little bit imbalanced that day. There’s so much we don’t know about implantation, but the embryo is not the only thing that’s important. 

 

N: You know, I don’t know if I would have had the perspective to ask the questions that might have prevented this quandary that I’m now in.

 

P: I dont know this for sure but I can well imagine that there’s some evolutionary pressure they’re forcing you to focus on reproduction as you know, up to the absence of anything else right because that’s kind of what you’re

 

N: I like that idea. take some pressure off. Yeah, I really like what you said earlier, though, about I don’t remember exactly how you put it but how, no matter what decision, you know, make or I make in this like there’s going to be regret. And I think that that’s also something it’s just a process of coming to terms with right that oh, there’s going to be some answer that makes everything okay. 

 

P: Who is hashing out these ethical issues is there there are medical ethicists who are working on it or? Well, there’s

 

Dr. Glenn: a lot of people that are not only just PhDs, but also there’s like an ethical committee on the American Society of Reproductive Medicine. We have ethical committee guidelines that discuss all these things. And usually you don’t want to just doctors on this panel. You want a lot of other great minds in there too. So there is definitely a lot of research people that you know, do their PhD in ethics. And so I would actually kind of go back to those ASRM community opinions and guidelines for ethics just as we continue to struggle with different topics as we learn more as we’re able to do more you know, when you look at the beginning part of IVF and the you know, late 80s, the chances of success disciple was like 2% and they couldn’t freeze extra extra embryos. They had no capability of doing it yet. And so as we get better at doing things, more ethics come up

 

N: there’s going to be something that happens in the future. That just makes it really, really clear that now is the time when I need to say goodbye to the embryos and I’m still sort of magically waiting for that. I know that I wanted to let go of these embryos but why today on Wednesday at 156 day now, and you know, and perhaps there will be some moments when crystal clear to me in some way that this is the moment when it just poetically makes sense, you know? So that’s I think, just part of trying to tamp down the regret.

 

P: Yes, yeah. Who wouldn’t search for clarity. That’s totally makes sense. I so appreciate you coming and talking about this because there’s not that many conversations about this and everyone who goes through IVF must have some version of this quandary…especially if you go through IVF and it is successful, then the potential of those embryos feels exceedingly real.

 

N: That’s exactly right. Yeah. Yeah. I think watching my son grow also was part of this difficulty in letting go of the embryos. These embryos were formed, you know, at the same time that he was formed, is so tangible to me. He is a particular person is a boy who loves breakdancing and Brawl, parsley, basketball, and his dog, you know, and he has his very particular room and his likes and dislikes and so not so hard to extrapolate from there right these other these other embryos but I I do want to be very clear also just because the abortion debate right now is so front center in our country that I think that our choices my husband’s and my choice, but he’s very much prefer to me my feelings are much bigger than his around this. And so it’s our choice, but it really it really is my choice just because of how his feelings lie. But my choice about what to do with these embryos feels very important to me the fact that I have the freedom to decide what to do with these embryos and that I know, given our family circumstances, given my husband’s and my age, whats right for them, and that to me feels like a part of mothering that feels like nobody terminates life. Nobody destroys frozen embryos because it’s easy, but because that is what they know to be to be right for them and for their life and, and for the life of the embryo or unborn fetus. So that’s just I don’t know if we want to go into all that but I do think since we’re talking about like this sort of like middle place where embryo scan between life and non life, you know, that’s sort of my my thinking on that and all there is right to deal with this like, as you say like coming to terms with the unsettlement of things such a big decision, but I’d still think that it’s a decision women should be able to make

 

P: I totally regret that the abortion debate is so political and so polarized, because it’s kind of a nuanced question, and it is, I think, if really want to talk about the science or what’s at stake. No, that gets into the conversation. It’s treated as is very black and white thing, which clearly it’s not, you’re in this middle space where it’s not in your body, and so even a little bit more leverage over it. But

 

N: I like to offer myself up as an example of someone who does not see an embryo as being as disposable as biopsy tissue, and does see the sort of weight of an embryos potential and yet I absolutely believe with my whole heart that a woman should have the choice of what to do with that embryo.

 

P: I totally agree. I just think like the abortion debate, debate forces women to say not life period at the end, while it is not a life it is something it is potential it is it is something that is important and valued, it is tricky. So maybe there will be more discussion around this topic if the abortion debate wasn’t hanging over it.

 

N: Totally. Well, I do think so many of our like public conversations force us into black and white thinking sort of like that polarized one side or or the other, but embryos really do occupy this very mental state, which is which makes them really interesting to think about. Yeah,

 

P: I totally agree. Well, Nicole, thanks so much for coming on and sharing your story. And I will definitely attach her essay to the show notes because it is beautifully as a writer totally blown away. And probably you do this too. When you read other people’s writings. There’s certain phrases where I think oh, so beautiful and Nicola has thought of it and now I can’t use it.

 

N: That is such a compliment. Thank you so much for your kind words and for reading the essay and for having me on your show.



P: thanks again to Nicole for sharing her story and her struggle about what to do with her frozen embryos…as Dr. Glenn suggested, ethics is working hard to keep pace with science, and until they are fully aligned it seems we each have to figure out how to manage this situation. To be clear I completely support a woman’s right to manage her own fertility, whether that involves a pregnancy or an embryo–but having that right doesn’t make the actual decision easier. I wish NIcole and her family luck and comfort in the decisions that she will make on her own horizon…and thanks to Dr. Glenn for sharing a little bit of her experience and her expertise about the complicated and fascinating process of IVF.

 

I will put a link to Nicole’s writing in the show notes, which can be found on war stories from the womb. Com…

 

Thank you for listening…if you liked the show, feel free to subscribe and share it with friends.

 

We’ll be back soon with another inspiring story



 

 

 

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Episode 45 SN: Babies that Started with a Dream: Julia’s story

Pregnancy involves massive changes and for some of us, one of the first hurdles is overcoming  issues that have developed in our bodies that make getting pregnant and being pregnant difficult. On the road to becoming pregnant, today’s guest learned that she had endometriosis, an issue that she’d painfully lived with for years without a diagnosis, and which required surgery before a pregnancy could develop…and after the first child, the number of physical obstacles seemed to grow more numerous–more endo, a bit older, a shorter menstrual cycle, a medical community that was suggesting that pregnancy was unlikely again…but today’s guest’s story should remind us to never bet against mother nature…

You can find Julia’s writing here

You can find links relevant to Dr. Jessica Drummond:

Outsmart Endo Website: www.outsmartendo.com
Schedule a Strategy Session with Dr Drummond: https://outsmartendo.myshopify.com/products/initial-consultation-call

We also set up a 10% off coupon for folks who listen to your podcast and want to set up a strategy session with Jessica. 
CODE: WARRIOR10 

Type 1 diabetes and male fertility

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4814953/#:~:text=Diabetic%20disease%20and%20experimentally%20induced,and%20ingredients%20of%20seminal%20plasma.

https://www.diabetesincontrol.com/the-effect-of-type-1-diabetes-on-male-fertility/

Chemical pregnancy

https://my.clevelandclinic.org/health/diseases/22188-chemical-pregnancy#:~:text=What%20is%20a%20chemical%20pregnancy,miscarry%20don’t%20realize%20it.

Audio Transcript:

Paulettte: Hi welcome to war stories from the womb. I’m your host, Paulette Kamenecka. I’m an economist and a writer and the mother of two girls.

Pregnancy involves massive changes and for some of us, one of the first hurdles is overcoming  issues that have developed in our bodies that make getting pregnant and being pregnant difficult. On the road to becoming pregnant, today’s guest learned that she had endometriosis, an issue that she’d painfully lived with for years without a diagnosis, and which required surgery before a pregnancy could develop…and after the first child, the number of physical obstacles seemed to grow more numerous–more endo, a bit older, a shorter menstrual cycle, a medical community that was suggesting that pregnancy was unlikely again…but today’s guest’s story should remind us to never bet against mother nature…

I am also including the insights of a functional nutrition and integrative women’s health expert, the founder and CEO of women’s health initiative who focuses on endometriosis

let’s get to this inspiring story.

Hi Thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?

Julia: I’m Julia Motyka. I’m from Western New York. I’m from Binghamton. I’ve lived in New York City for quite a long time. So

P:  that’s nice. Let’s talk about family. Do you have siblings?

 

J: I do. I do. I have a younger brother who is about four and a half years younger  than I am. And then I have what I like to call my adult onset family. My mom remarried when I was in my 20s Until I wound up with four additional step siblings. But we have a unique relationship because we didn’t grow up together. We kind of pal around at the holidays and have this kind of regard for one another as kind of slowly chosen family. But but my my deepest sibling relationship is with my my biological brothers

P: and coming from that setting. Did you think oh, I’m definitely gonna have a family.

J: Gosh, you know, I mean, it was a complicated journey for me. My family history was sort of thorny as a child because my my parents are wonderful and complicated. And I’m a product of an early divorce couple. It was a very acrimonious divorce. And both of my parents went through sort of long road towards becoming who they are now, in some ways, much changed from when I was a kid. And so when I was in my teens and early 20s, I wasn’t sure that actually having a child in any way particularly a biological child was going to be right for me. I also have an illustrious history of mental illness in my family on both sides, and have been a primary caretaker to my father, who was sick in my late teens for a while. So there was a period of time for me where I looked around and I said, you know, maybe this genetic line doesn’t need to continue. Maybe we’re okay. It’s okay to just finish it here. And I wasn’t sure that I needed to do any more caretaking to be honest. But there was a moment or a series of moments, I suppose in my early 30s I was partnered with my current husband. And he really deeply wanted children. And I felt wasn’t a sense of negativity around it, but I felt profound ambivalence. And I started to really consider why that was the case and unpack my own family history and sort of intergenerational legacies of mental health challenges and I started to have these dreams of a little girl. Big, big dark blue eyes and like a mop of curly dark hair, and the dreams were very strong. She was always about 18 months or so. And I would always wake up and feel like the imprint of a body on my body. 

P: Wow. 

J: And if they came every it was like it was over the course of over a year I would have some sort of instrument. And then one night I had one of those dreams and I woke up in the morning and she’s with me all day. Like my little silent passenger. She’s my constant companion. And I from time to time would work as an audiobook narrator so I was recording a book a day, and I was in the studio. And I was about halfway through my session and she vanished. The film doesn’t disappeared. Whoever she was, she was gone. And for the first time, I felt this enormous space of regret open up inside my body, and I thought oh, I don’t attempt to become a mother somehow I will regret this. I will regret it. In a way that I hadn’t experienced before. And I wasn’t sure yet at that time, how motherhood would come and how we would proceed but I knew it was something that I wanted to watch for and so we did. And so that’s already

P:  that’s amazing to have a feeling of pre regret.

J:Yeah, it was really it was like it was like advanced regret. Congratulation. It’s like, you know, I’m that deeply Jewish. Regret in advance.

P:  I see you I see you and I’m applauding. That’s well done.

J: Very good. Thank you. It’s like it’s a show it’s a special show.

P: So when you guys decided to get pregnant, what are you imagining pregnancy will

be like, 

J: you know, to be honest. I always assume, hahaha. That it would be like falling off a log. I was like, you know, I’m healthy. I’m like, I’ve been practicing yoga. I’ve got I’m really aware of my pelvis. I’ve got a Kundalini I know what it was like and like, it’s like I’m I’m available to myself. And I like to think of myself as being very physically aware. And so I was like, it’s gonna be great. And if it didn’t, wasn’t great, it wasn’t easy. And it started to take us quite some time. And initially, sort of like, wow, that’s just the right baby’s gonna come. I got very woowoo about the whole thing. That all came from a dream so why not? 

And then it was almost two years after we decided to start trying to have a baby, that we ultimately decided to see a fertility specialist. Now again, you know, Pride goes and all of that. So I and my husband both assumed that it would be an issue of his because he’s a lifelong type one diabetic. And so we were like, well, you know, with many type one diabetic men sperm count can be an issue there. There are all kinds of complications that come with that particular chronic illness. And so we both thought, probably that may be the case.

P: so, Real quick here. type one diabetes is an autoimmune condition that affects someone’s ability to produce insulin and you’ll want insulin to help move sugar from your blood into your cells. Without it you leave too much. sugar in the blood and not with the cells which is required for energy. Having this condition can affect the process of sperm development in men and sperm require a lot of energyto  be good swimmers, and this insulin issue affects their ability to do that.

J: And lo and behold, we both got checked out so I’ll go to I’ll get checked out to why not. And they did a vaginal ultrasound that was wonderful. In New York City that we went to, and within about 45 seconds, finishing the obstetrician went, Oh, well, there’s your problem. I have Excuse me. We have a you have a huge endometrioma eclipse in your left ovary and I and I had never heard that term before. What what is that? What do you mean to describe an endometrium? It’s technically but it’s really just a sort of a stack of layered endometrial tissue of uterine tissue that has grown outside of the uterus. And he said, well, that we’re gonna have to remove that. And he said, Do you have endometriosis? And I said, Not to my knowledge. And he said, Well, you intend to have extreme pain with your period. I burst into tears. 

Now, the backstory of that is that I had gone to multiple doctors for decades, with unexplained extreme pain during menstruation. I had sciatic pain I developed nerve pain in my back, I would have to sit down in the aisle of the drug store in the middle of a cramp. In order to not lose control of my legs. Sometimes I had a really severe pain, but it had been dismissed and dismissed and dismissed to the point that I just stopped mentioned. And kind of forgotten about it completely. Just kind of was living with this debilitating pain every month. And so when asked about, Oh, I’m so aware of my body and yet decided to numb myself to this incredibly important piece of physical information that I received month after month, because everyone outside my body had told me it was nothing.

P: we are lucky to have the founder and CEO of integrative Women’s Health Institute on our show, Dr. Drummond, thanks so much for coming on. So why don’t you tell us about your training and your institute?

Dr. Drummond: Sure. So I started my career a little over 20 years ago, my initial training is as a physical therapist, and I practiced you know, pretty direct hospital and clinic physical therapy for many years more recently got a doctorate in Clinical Nutrition, and also became a board certified health coach and about, like 12 years ago, started the integrative Women’s Health Institute as a training school for my colleagues to learn about functional nutrition in women’s health and we also have a flagship Women’s Health Coach certification, which is the only health coaching certification that has that third party Board approval in the world that focuses on women’s health. And so I’ve been doing that for quite some time now and I also maintain health coaching and clinical nutrition practice around pelvic pain and endometriosis.

P: So let’s start with some basic stuff. Can you define for everyone what endometriosis is?

Dr. Drummond: Yes, endometriosis is a disease process where you’ll have these lesions that are made of tissue that is very similar to although not exactly the same as the tissue that lives the inside of the uterus, and that’s called clinical terms, the endometrium, which is where it got the name used to be thought that these lesions were a consequence. of what’s known as retrograde menstruation, meaning that the menstruation was are going into the body instead of out of the body, and that the endometrial tissue was growing and kind of forced growing outside of the uterus. But that theory has been pretty strongly disproven in the last decade or so. And it’s not fully known sort of where these lesions come from, if you will, but there is a genetic component to about 10% of people with uteruses around the world have endometriosis. And about 9% of fetuses, female fetuses or fetuses with uteruses have endometriosis at birth. So these lesions exists in about that 10% of the female population throughout life so there’s absolutely a genetic component, but there’s also an inflammatory and very likely autoimmune component. So it’s a multifactorial disease in terms of how it’s expressed. And it’s tricky because there’s staging of this disease in terms of extensiveness throughout the body and severity of the lesions, but that doesn’t very well correlate with symptoms. So people can have a lot of endometriosis everywhere and have very little symptoms. They may not even know they have it unless they’re struggling with infertility or they just simply may never know they have it. And others cannot, you know, maybe when the surgeon goes in to remove the lesions, doesn’t see a lot of lesions, but a person can still have real severe symptoms.

P: had they done a vaginal ultrasound before the last

J: time I had gone to the to the OBGYN specifically for pain. They did do a vaginal ultrasound there were no endometrial like at that time. So I don’t necessarily fault the doctors that didn’t know what to look for or how to look. But I do have a large finger wag for the the kind of culture of women medicine that has spent so much time pretending it doesn’t exist. Just that

P: Well The dismissal is so frustrating.

J: Yeah, it was it was just it. I mean, I was told repeatedly, right? Well, you probably just have a low pain threshold. Some women just have more painful periods. And I’ve been moving because I’m slight build. I’m tall and I sort of i It’s not that I present the trail. I’m quite strong, but I presented really, I suppose. And so people would look at me here about my painting. Now this is probably just a look, she probably the truth was I was in horrible, horrible, horrible pain. And I will say that on a pain scale, right? This is the reason we have a subjective pain scale because it shouldn’t matter if my seven on the pay scale is your tooth. I’m still at a seven. And it’s not for anyone else to judge what that seven does or doesn’t mean about my strength. It means nothing. You know, so the basis for their statements I take issue with

P: I brought this issue of dismissing pain to Dr. Drummond: maybe we could talk about why it’s so hard to diagnose exactly or why women’s pain is being dismissed and whether that’s like a larger cultural thing or something specific to endometriosis.

Dr. Drummond: Yeah, so that’s absolutely a larger cultural thing that women’s pain is just generally dismissed. In fact, the word hysteria essentially comes from someone you know you’re crazy if you have a uterus, right? That’s Mr. His means uterus and Latin. And it sort of points to how women are perceived in general when it comes to pain. This is significantly worse in women of color which is problematic the patient you’re talking about right now is her experience around it’s normal to have painful periods you’re fine you’re probably this sensitive to pain we don’t see anything is extremely common as an initial response and fact even now, so I’ve been doing this for just over 20 years, and it used to be 15 years diagnosis when I first started, and now it’s still pretty bad. It’s 12 years to diagnosis.

J: Ultimately, right upon receiving the diagnosis, good undergo a surgery and then for hours, it’s usually about a 30 to 45 minutes surgery, and mine took four hours. It turned out that I had five endometrium between five and seven centimeters in size. And they eclipsed one of my ovaries one was attached to my bowel one was attached to the outside of the uterus and they were everywhere for my pelvis. I also had two small fibroids and I had scar tissue that was so profound that it was completely burying and occluding one of my fallopian tubes.

P: It’s great that there are things you can do to put endometriosis at bay like surgery, I brought this question about efficacy to Dr. Drummond. So Julia had surgery to remove her endometriosis, and I’m wondering wonted like the tissue lining of the uterus grow back.

Dr. Drummond: Maybe it depends on a couple of factors. So when I first started doing this, the kind of surgery that was done was called unit was called ablation surgery where they would like burn off the lesions.

Fortunately, while this is still done, but it shouldn’t be if your surgeon says they’re going to do ablation, and out of that office, so what you want is excision surgery where they actually cut out the lesions in the same way that cancer sort of cut out and the better of it is cut out the roots. Now there are times there’s a kind of endometriosis called Deep infiltrating endometriosis that again, cutting it out is key, but sometimes that’s not fully possible, sometimes even with great excision surgery. Just like with great cancer surgery, it grows back sometimes sometimes the surgeon just missed an area where maybe they didn’t see it. It was too small and it grew in another place. And sometimes they just didn’t see it yet and it grows in another place. So but what I would say is that in the first half of my career, I commonly saw people who had 15 endometriosis surgeries like just a surgery every year and they just kept going and burning it off trying again, you know, now I work primarily, you know, my clients and patients primarily see excision surgeons I even either see them after before and after, ideally, if they have surgery, which isn’t always appropriate varies, but a lot of the time it is and that you know, I might see someone with a maximum of maybe three surgeries in the lifetime, but it’s much much more common to see just one surgery. 

J: So I finished the surgery, and I was told that even with the surgery, our odds of becoming pregnant naturally were relatively. I was 35 at the time and I remember kind of lying my bed in the in the week after the surgery, sort of it you know that semi lucid but I was sort of taking my my pain medication and sleeping a lot and I was thinking a lot about the women in my family who I referenced before who had struggled mightily with mental illness and and I had this sort of strange experience where I felt like they had kind of like I had cleared a pathway. And it was as though one of the kind of historic pain of the women in my family has kind of been excised along with these sort of lumps of tissue. And so I wonder what would what would happen and at the same time, we went to an adoption fair and we started foster care paperwork and I said, Listen, however your child, you are welcome. And we decided to do four rounds of aid and insemination, four rounds of IUI

P: let me say one thing here about the doctors predictions? Who would prefer a world in which the doctor said well, we have our averages. On average, women are 35 and have endometriosis and the husband has diabetes on average. It is harder for those couples. We do not have a crystal ball and we cannot predict what will happen in your case. So we can give you the average and then you can make your own conclusion but to say you will have a hard time frustrating right because those all words have effect right? So 

J: yeah, yeah. Well and it creates a situation in which you feel like you’re kind of living out a preordained path, right like, oh, we will have a hard time we this will not work or and I wonder for how many couples or how many, how many people seeking to become parents. That’s the end of the story. Because they take that word, and go okay, well, I guess we tried that of canoeing on their own path in your own way. So for us, I didn’t feel ready to completely let go of the idea of biological motherhood, but I also felt that was important to kind of look at it as I’m a firm believer that there are many, many, many ways of becoming a parent in this life. And you get absolutely the right child, no matter whose body they have originally come out of. So we went to the adoption fair and started I went to the first foster meeting and started reading all the paperwork. Meanwhile, we did our second IUI attempt. And about five days after that attempts, I kind of had this feeling of like, I wonder feels a little I just feel a little something. And I thought you know, don’t delay. 

But lo and behold, about a week after we started our foster care paperwork, I turned up pregnant. And after all the difficulties in becoming pregnant and in finding our way toward pregnancy my pregnancy with my first child was really just juicy. It was a good a really peaceful time in my life that I had profound nausea. I was not it was not so fun at different moments, but it was an uncomplicated pregnancy. We decided not to from the sex of the child, but we didn’t know who we were going to get through this common. We have picked out a name for her for the baby and for on and on and on. Everybody thought it was a boy, the girl who improved and then the day before her due date. I went into labor and I went into back labor and had really like a 36 hour saga of of childbirth 

P: before you get to the birthing. Let’s talk for a second about what you thought it would be.

J: Oh, yeah. No, I pregnancy I actually thought that my pregnancy would feel weird to me if that makes sense. Because it’s such a strange thing that happens in the body. But what I ultimately wound up feeling was was it felt very, very natural to me to be pregnant with my first child. The second child has a different story. So that was intense. But the first child I was like this was I was I was designed. I felt really easy in my body. I’m the kind of person who I always have 12 different things happening. I do a lot of different things in my life. And I like it that way because my mind tends to function best when I have a lot of different things spinning in the air around me during the pregnancy. It was one of the first times in my adult life where there was nowhere else I wanted to be. There was nothing else I wanted to do. I was content to just be in that moment growing that baby. It was a profoundly peaceful time. 

I really didn’t expect that it would feel that way to me. So when it came time to have the baby to birth then I went into it actually thinking it would feel easy. If no birthing I had like I had been like sitting on my birthing ball and bouncing and moving my pelvis and I’ve gone to prenatal yoga and I was like I was really I was ready. I pelvis is ripe, it’s blossoming flowers. Great. And then the labor actually began really awful. Because we were we were set up spine to spine. And it was very tough. There was a there was a lot of vomiting. There was a lot of labor began really fast. Slow back down. I had a really supportive birth team. My husband was deeply supportive. I had a doula who I treasure who really had that was a seasoned person in the birth world and was able to kind of help continue to shepherd me through the challenging moments and my obstetrician was also remarkable was was deeply patient and present with me and ultimately manually dilated my cervix a few times and in the sort of the continued hope of avoiding a cesarean which we ultimately did a voice which had been my hope so it had I had planned for an unmedicated birth at a birthing center and we wound up at about our 32 transferring to labor and delivery so that I could receive an epidural. 

Ultimately, interestingly enough, the epidural was what allowed my body to relax enough to let the baby down. So the baby was was born vaginally after 30 Almost exactly 36 hours like 36 hours and 10 minutes. And she as she was coming out of my body, the doctor said and I because I had the epidural I’m very present for this time. She said wow, that’s a lot of hair that the baby has and I kind of laughed and sometimes I wonder who she is who they are. We didn’t know the shoe yet. As the baby was being born, my doctor said hey, we get your baby and helped me kind of move the child onto my chest. And there was this big mark of black hair. Turned curly almost immediately. And these huge dark blue eyes looking up at me

 

P: goosebumps! Goosebumps! Wow oh my god,

J: and so the baby and my dreams had always been named as me and of course no that is a child thing. And she always had to be she waited for him, which I’ve always been really grateful for because it says special gift for me to get to be her mom. And then we thought that was it. We thought we toyed with the idea of a second child. You know, I had been told once I started menstruating again, it was sort of the definitive pronouncements as the medical industry here. I had been told by several doctors that that the year after I started menstruating again, was the most fertile window in which I could become pregnant and after that year, it would probably become difficult or you know, if not fully improbable. So about 14 months after I had Esme I started menstruating we were like okay, let’s do this. Let’s make this happen. And nevermind that I didn’t feel ready. Nevermind, nevermind that my child didn’t feel it. None of us were ready to do it. But we decided to go ahead and try and very quickly. It turned out that my left fallopian tube had occluded again, that it was no lot that nothing could pass to one side. You know, I was 3738 something like that. I don’t remember anymore now, but I was getting older.

P: it’s occluded…It’s because of endometriosis. Is that what’s going on? Okay.

J: Yeah, I mean it had been buried in scar tissue and even though they again there was no scar tissue evidence if the tube is so small I mean if you consider consider like Angel Hair Pasta right I mean, teeny tiny. And so it doesn’t take a lot of pressure to clamp it down. 

P: This is starting to sound like a design for all of us. 

J: Really, I mean, you would think given how long the the human race has managed to survive that those tubes would be a little more resilient and maybe they are I guess maybe if you consider the other things they undergo. But a scar tissue is not an easy thing.

P: I interviewed a reproductive endocrinologist and she said something like fallopian tubes if you look at them the wrong way. Just they collapse. So I feel like you’re our assessment here. is validated by someone who has seen them.

J: Yeah, that’s really thank you. That’s useful to know. 

You know, we talked about it and at the time, my husband was really in favor of pursuing IVF which we were told had, we had about a 20% shot at a baby with IVF and I sat with that idea for a while and I have friends for whom IVF have been extraordinary, who have beautiful families I have absolutely I champion it. I think if it’s the right choice for you. It is a fabulous choice. It was not the right choice for me. I had a lot of anxiety. I’ve had some hormonal imbalances in the past, and I just didn’t feel I didn’t feel good about making that choice for my for my own health. And I already had one child that I needed to be present for. And so I decided not to do that. And it was an extremely challenging time in my marriage. I think my partner my husband felt at the time that I was kind of that it was it was sort of my way or the highway in a certain sense and and it was being my body it was and that was very hard for him to feel he had no agency and also hard for me to feel that my body was somehow secondary or not. Well, my feelings around my body were not valid because they they negated something for him. It felt like and until we let it go. He traveled a lot. I worked a lot I spent time with our daughter. We kind of found our way back to each other. 

And then fast forwarding to the spring of 2020 where we all we all know what happens in the spring of 2020.  And my little family of three left the city as we were privileged to be able to do and then time in a country house for about seven months. And a couple of months into that time. My daughter started talking about wanting to have a baby I very famously she and I had a conversation. She was just about to turn four and she said I want a baby baby sister. So you never know but she said how could we get one and I said well, you know some people have a baby. Daddy has to give put something inside of the mommy. I sort of got like a about it. I tried to be clear without being too detailed because you She wouldn’t have been interested anyway, was a pause. And she looked at me and said, So you and daddy would have to do something together. Give me something and I Yes. I said, I didn’t don’t see that happening. Well, you never know. There are other ways you know, maybe some people adopt a baby and then for days after we talked about adoption, she wandered around the house like slapping her hands together and rubbing them together going. Now we’ve just got to find that baby. We’ve got to find that baby. How are we going to do it? We’re really be looking around. 

And so my husband and I, in some ways, because she was so deeply he started talking about adopting a child in the midst of that time. I mean, I haven’t really told this story line up this way before. It’s a bit of a saga I’m discovering. In the midst of that time, I discovered that I have one of the linchpins of disorders, which basically means that I have several cancers that I am genetically predisposed to. I have a genetic anomaly. My mother has it. My brother does not and I do as well as my mom. And it comes with up to 48% chance of uterine cancer and a 30 some odd chance of colon cancer. There’s some gnarly ones in there. The uterine cancer issue was particularly concerning to me because my endometriosis, right? Uterine cancer is actually cancer of the uterine tissue is cancer of endometrial tissue. And so given that mine grows all over my body felt like a problem. 

P: yeah, that feels threatening

J: yes, it feels threatening…So I received the diagnosis. Not really threatening, it felt like why why roll the dice in that way. And when when there’s a part of my body that I can potentially just remove and remove therefore remove the threat or largest so I started to plan for a hysterectomy. And I currently you know, I was at this time I was 14 was the summer before I was turning 41. And my menstrual cycle was only 22 days long. And my one fallopian tube was occluded. I was starting to have more severe pain again with each cycle. And I thought we know the baby maybe better to let this go now let them be all girl off into the sunset or a little party or something. So I was in the midst of making that plan and starting to identify you know, with COVID When were they going to do start elective surgeries what who did I want to do this and talking to my OBGYN who I like, like and trust and in the midst of that I missed my period and I thought that’s weird because I my periods come close together but they don’t I don’t. Initially I had done a lot of head standing in my yoga practice and I also an intermittent yoga teacher. So I’ve been teaching inversion practice that week. And it’s like well, sometimes when I’m upside down a lot, you can alter my menstrual cycle a little it must just be head standing in my trades doesn’t come like four days that I just never missed. I never miss it. It’s never it’s never been a skipped. I’ve never I’ve never been willing to skip through periods. And so four days and I thought gosh, stress, hard years pandemic you know, maybe it’s perimenopause, maybe I’m just going into menopause early. 

And then two nights later, I woke up at three in the morning. I thought God I want a bowl of cereal. And I and I went I lay in bed. I thought to myself Is it possible that I could be pregnant? I did the math and listen, I don’t know about your house. That’s the pandemic was not a sexy time. Not was not like, wasn’t like let’s get it odd. No, there was really like one opportunity that month and it happens to fall. Technically after I should have ovulated even on my shortened cycle. But I did the math and I guess conceivable it’s possible, but come on. It’s so unlikely and so I didn’t even tell I didn’t tell my husband I was like I can’t open up this can of worms again. I can’t I can’t pain that we went I can’t do it. We won’t survive it. And there’s nowhere for us to go. We can’t like…we’re trapped in this house  together. And so, made up a story about needing plastic bins. Like I need to buy bins, I need to go buy bins and he said, you know, middle of a pandemic Can’t you just order those on Amazon and I was like no, no I need to see them. I need to go to I need to go to Staples. See the bins. I got in our little car and I drove to Staples and I bought some beer and I didn’t see and then I pocketed a home pregnancy and I purchased that she didn’t steal it but I took home a home and just to be clear, 

I got home and I woke up at like 5am for a bowl of cereal and to pee and lo and behold it showed up positive and I looked at it and I thought well you know it’s going to be a chemical pregnancy it’s going to be ectopic there’s there’s just no way but I did at that time share with my husband  I said you know I woke them up. I poked him he sleeps with if we put earplugs and earplugs and a face mask. He sleeps like he’s at a spa. And so I let you jab him hard to get them to wake up. So I’m shaking him and he pulls the mask off and takes the thing out of his ears. And he looks at me like what your problem was that I have to tell you something. And he looked at me like what could you possibly have to say a 515 in the morning? And I said I’m pregnant. And he just started laughing hysterically. And then he looked at me and he said shut up and we started and we just sat there staring at each other for a few minutes. And then we decided we would tell no one because it was probably not viable. drove into New York City and had had kind of done all of our resident testing and quarantining on a way to see our our respective parents so that our daughter could see her grandparents for the first time in a while. And I was dropped off at my doctor’s office secretly, so that I could be checked. And lo and behold, I my OB even said, she says, you know, the odds of this being viable are very low. And if it was like, I know, she said, we’re talking needle in a haystack. And I said, I know that no one’s getting your hopes. And she’s

 P: Let me ask you a question, been so confusing you know, you have all these issues that should stymie your ability to get pregnant. All those things. This little guy, this little zygote has made it past all those barriers. So why do we think the pregnancy won’t last? 

J: Well, we didn’t know yet that he had, because there are two ways in which the pregnancy could have shown a positive and been non viable, right. Initially, the pregnancy could have been a topic it could have been outside of the uterus, which given the state of my fallopian tube was was not unlikely necessarily, and it could have been chemical which given my age was also a possibility. So until we did the ultrasound to check and see that there was actually somebody cooking in there. There were still there were still a couple of variables that left it uncertain.

P: so I didn’t know what the chemical pregnancy wasn’t having a look at. According to the Cleveland Clinic. It’s basically a pregnancy that ends before five weeks, and embryo forms and might even embed in the uterine lining, sending out speaking of HCG, the hormone that indicates a pregnancy is present HomeKit but for whatever reason, the embryo stops growing and ends in a miscarriage. It’s referred to as chemical because the HCG was the only sign of its existence. It’s too early to see it on an ultrasound. You will be more likely to run into one of these types of pregnancies if you’re doing IVF because we’re being monitored so closely. 

P: I wonder if your cereal test is also a factor here. Would a chemical pregnancy make you have

a craving?

J:  I don’t know. I don’t know. You know, that’s an interesting, that’s an interesting question. And to be honest, in those early days of the pregnancy, I was so convinced that it was on that it was not going to be viable. That I didn’t. I didn’t question I didn’t look to the positive because I was so I think afraid of having my heart broken. So I didn’t I just didn’t even entertain it. I was like, There’s no way. This is unlikely. What whatever. And I was I was wrong. Right? So we did the vaginal ultrasound and it showed a very healthy, early embryo sort of little little back of baby and a little sack of placenta embedded very helpfully in the uterine wall. And my OBGYN looked at me and she smiles and she said, she said if you’ve been back in two weeks, and we’ll check the heartbeat, she said this looks really good so far. Is that includes your heartbeat in two weeks. Chances are April, we’ll have a baby. 

P: Wow, 

J: baby is someone who really wanted to be here. And I said yes. So two weeks later we checked there was in fact a heartbeat. And off I went into the pregnancy now to ask her about the first pregnancy. I will say that the second pregnancy my expectation had been that it would be very similar. I’m going to feel peaceful, I’m going to feel grounded and good. My body is going to feel good. I felt like like shit on a stick. I felt really bad. For the whole pregnancy. I felt miserable. I felt conflicted and I felt anxious and I felt tired. And I had kind of gotten into a space where I was peaceful as the mother of one child and who am I to look like a miracle look at a miracle in the eye and that really messed up my life here baby. But he that I felt what i felt like i The time had passed and I had moved on and I was doing all of these other things. I didn’t want to go back into the sort of deep absorption of a new baby and I really cherished and still cherish the deep relationship my daughter and I have and I don’t know that I want a triad here. I really like that we are a dyad  that’s important and something right about it. And then I had a series of pregnancy complications I had unexplained bleeding at around 11 weeks turns out to be something called a sub chorionic hematoma, which is basically just a pocket of blood inside the uterus that lends itself out. And if it is often not threatening to the baby, it doesn’t always resolve but it required almost six weeks of bed rest and having listened to another of your podcasts, I know that bedrest can go on for a whole lot longer. But I shudder to think about to be honest, but it just kind of everything added to the feeling of unease and anxiety that I had. 

When we did an ultrasound in the midst of all of the bleeding the baby was was doing actual little backflips. And so he was fine. He was imperturbable good to be unflappable, it’ll be a really it’s a swimming around. What’s this other liquid who cares? So, six weeks on bed rest, under a pelvic rest. I could do like movements that really was meant to stay chill. And then it resolved and I did ultimately have a home birth with the second baby. 

We talked a lot because of COVID. Initially we talked about what the different issues were in a hospital. Birth setting. And so my OBGYN who had delivered my first she was actually she no longer delivered babies. But she said, you know, listen, if you were a person who chose to have a home birth, I might be willing to make a special guest appearance. 

P: Wow. 

J: And come on over. So, so we found a midwife that I that we really responded to that also knew my doctor, we worked with the doula that the three of them all knew each other. And so when the day came, it was sort of like the inverse of the first pregnancy and birth. The pregnancy with my first was so easy, and the birth was such a challenge. And with the second baby’s birth, the pregnancy was so challenging and so filled with anxiety and doubt, and fear and concern and confusion, the sort of reinvention of myself as mother of two as opposed to Mother of One which doesn’t feel like a profound change. On paper, but it’s in my body it felt in women that felt like I was being asked to dimensionalize in a new way that I didn’t even know existed. And I didn’t feel I had the capacity. I just didn’t know how to do it, but the book itself beautiful. Birth, I went into labor has like five in the morning. It was slow and gentle. Gentle enough that  three hours later, I walked my daughter to school, and we would stop every eight or nine minutes and I have a contraction, and then we keep going and she knew that my mom was coming if my mom picked her up at school with baby day. And so we said okay, I gave her a big hug the goodbye is that I don’t know if a baby date yet. But if a baby get up mom would call my mom. You’ll see Mark at the underscore. That is me. And apparently when my mother arrived just in time to pick her up at school. My mom arrived when she got there and Esme was about 30 feet away, coming out the front door of the school and saw my mother and shouted at the top of her lungs, “it’s baby day!!!!”

P: that’s appropriate

J: but it was just it was a truly gentle labor. So I labored on my own. My husband was there and then he was setting up the birthing pool and kind of doing all of the doing all of the things that that I was ultimately so grateful that he did he was making sure that everything was set up for safe and we had just moved putting up curtains so I didn’t have to give birth to all of Manhattan Avenue. getting everything ready. Sort of like the neighbors. I really didn’t know we were going to be your neighbors. Welcome. But I kept having this experience where I would feel the baby drop off. And I would be like, Oh, this is when I threw up last time. This is when my body didn’t know what to do last time. But this baby was positioned differently. I was older. I had done it before. And this time I knew how to let go into the birth process and kind of lean toward it as opposed to pushing against it. So we I think it was about 15 hours of labor start to finish and two hours of really active into transition and then 15 minutes of pushing and he came out in the water, happy and peaceful and ready to go. And yeah, it was it was a remarkable visit. And there was this moment where my doula and my doctor and my midwife were all there and you were to the midwife had two assistants. I’m surrounded by five women. And there was a chorus around me, they all you know, this, the contraction would come and I would just hear the word breathe. And they were all like echoing like a little chorus around me to breathing. Breathe a baby down. Breathe the baby down. And you know, my husband had his hands on my back and it just it felt this sort of was almost like a meditation of strong sensation moving the baby out of my body and the second child born or you know, until he became really determined otherwise until he lets me know something else. Okay, and my daughter is dark she isn’t she has my eye color there now dark green and she has like thick curly hair. And it’s like intense. And my other child has strawberry blonde hair and crystal blue eyes and greets the world of like, hey, like happy to be here. Thanks for inviting me to the party.

P: Everyone wants a surfer…good work

J: work. Listen, it’s great. I’m thrilled. He’s gonna He’s gonna get with a smile but she gets a sledgehammer you know, life’s good for him. He arrived and and has been a little light beam that has been to be one in April this year. So I am now that he is almost one I’ve been told in terms of my other conditions, you know, basically that I can nurse him for as long as I wish to and will wait until I get a little closer to natural menopause and then likely I will go ahead and have a hysterectomy in order to curb the likelihood of uterine cancer emerging on the later side. And in the meantime, of having biannual pelvic ultrasound and an annual colonoscopy which is a real delight and you know, taking care to check in as much as I can with my body and do everything I can to keep it healthy. 

P: That’s amazing. I don’t know whether to say you should run out and buy a lottery ticket or if your son is the lottery ticket. Someone’s going on some kind of magic though and how does Esme like her brother

J: You know, I asked her the other night we went up for our first mommy daughter dinner. In the beginning of the pandemic. We went to a restaurant and she and I were sitting there by ourselves together. used to do all the time and we never do now and we’re sitting there and she’s eating spaghetti and meatballs. And I looked at her leaning cause of me. How is it having a brother? What do you think about that? What is it like for you to be an older sibling with the cause, very thoughtful for a moment and I was like oh, here it comes. She’s gonna send me some tomatoes. Oh like him. I was like Okay she does she likes him. He likes us. World the earth and for her for him. And I think she really excited by the prospect of having a sort of a comrade in our compatriots.

 

P: that’s an amazing story to have all this success despite the predictions that you were given at the onset.

J: Yeah, I mean, I think it’s that my story is a real testament to not letting the barbarians get you down right like don’t if you have a sense that that you their journey is not over or not what what you’re being told that it must be listened to that thing, right? It’s that that no path is preordained, despite what the medical field might like to say largely right because they don’t want to get it wrong. And it’s easier to say no than to say yes

P: Yeah managing expectations is a big game. So we talked in the beginning before we started taping about your writing about this. Do you want to talk a little bit about that? 

J: Sure. I mean, I you know, it’s very much a work in progress right now. The pieces that I’ve published have largely actually been sort of tangentially related to my parenthood. I write a lot right now about a whole different stories in my life. I know I mentioned at the beginning that caretaker for my father and so I’ve written a lot about the transformation in that relationship. My dad has had HIV and AIDS for a very, very long time, and I was his primary caretaker. In the 1980s for quite a while, and he’s very, very sick. So I’ve written a lot about my parenthood, as reflected through the lens of having gone on that journey with him. And then I’m just starting to come back to some work about my own journey toward parenthood. And fertility and what it was to decide to become a mother with the legacy of mental illness that that exists in my family and also the physical challenges that presented themselves along the way. Those are works in progress and forthcoming.

P: Well, you can give me links to your website and I’ll put it in the show so people can find your writing.

J: Yeah, we love that.

P: Thanks so much for coming on the show.

 

J: Such a pleasure. I’m so happy to have this conversation.

P: To get to Julia for sharing her story of overcoming the process of becoming someone’s parent requires so much flexibility, the ability to withstand physical challenges, and willingness to manage uncertainty. It’s a miracle any of us are here. As mentioned previously, you can check out the extended show notes at war stories from the room.com and there you’ll find links to all the things we talked about, including Julia’s writing, and ways to take a look at Dr. drumlins Integrative Health Practice. Thank you for listening. If you like this episode, feel totally free to share it with friends to Like and Subscribe. 

Thanks also Dr. Drummond. She and I have a longer conversation about endometriosis than is shared in the body of this episode. One thing I asked her is how people could potentially get a diagnosis more quickly, and I’m including her answer as a coder to this episode. So just after the music ends, you can hear her answer. Keep listening. We’ll be back soon. With another inspiring story 

P: is there any advice you can give to women to help them get a diagnosis faster? Is there anything they can do to present more clearly to whoever they bring the issue to?

Dr. Drummond: Yeah, that’s a great question. I think it goes a little bit back to when you were talking about in this case, the woman had a vaginal ultrasound, and in endometrial the moon was found. Here’s the tricky part about that. That if someone is if there is evidence of endometriosis on imaging, someone actually can see it that shows that that’s a diagnosis. of endometriosis. The problem is, is that not seeing it on imaging does not rule it out. The only way to truly make a diagnosis of endometriosis is by a skilled laparoscopic surgery which I highly recommend being done by a person who specializes in endometriosis or pelvic pain or at least minimally minimally invasive gynecologic surgeries. So not your kind of OB GYN who is, you know, three endo surgeries a month or a year. But someone who does this this is their whole job because it’s as complex, as good cancer surgery.

So you want someone who really knows what they’re looking for because sometimes these lesions can be missed, especially if they’re not in the most common places. So back to your question about how to kind of drive this diagnosis forward. So just because something is not seen on imaging or there are no abnormal biomarkers, blood markers, things like that. Doesn’t mean a person doesn’t have endometriosis. So if you still have symptoms, keep pushing the issue. A few things that might be valuable to test in the bloodwork would be just chronic inflammation markers, things like CRP but also ca 125. The markers of increased risk of ovarian cancer can be valuable. But really, it’s more of a symptomatic diagnosis. So if your story is something like huh the women in my family all kind of said things like Welcome to womanhood. You have your period this get used to it, it’s gonna be bad, you know, that’s a red flag and the history of infertility especially because generations before didn’t really talk about it. In this comfortable away, you know, that’s a red flag. Any any other woman, you know, cousin and sister, mother, grandmother, whoever had surgery for endometriosis or had early hysterectomy. That’s a red flag. The challenges is that I’ve seen two things in sort of a family history story. One is that person you know, the family just didn’t talk about it much there. There’s you know, there was a lot there’s a lot of shame around any kind of problem with menstrual health. So it was either not talked about or it was normalized that everyone in his family has bad periods. Or I see kind of from the more the sort of less conservative, will you say like pressive crunchier natural medicine. It you might hear stories like oh, you know, this pain is part of the like, process of your body expelling the toxins or something like that. Also, not accurate but a different take on it. So that kind of family history is a big red flag almost all of my patients, there’s something the family history, they just maybe didn’t know about it and then the second thing is that really intense periods that disrupted middle school, high school trying to, you know, play during the softball championships and just white knuckling the whole thing being in the nurse’s office throwing up passing out one of the doctors who is a brilliant endo surgeon up in Massachusetts he has the because it kind of like the signal that someone probably has I know if you ever found yourself sitting on a bathroom floor in a school with like your chin on the toilet just trying to like, cool down. That’s a big red flag.

P: Yeah, Julia Julia mentioned that she during her periods, she just collapsed like the CVS because she you know, walking further

Dr. Drummond: pain down the leg. Yeah, a big one. Because of the nerves involved, but also that vasovagal response that kind of autonomic nervous system sweating, passing out needing to kind of lay down in the girls bathroom, putting your head on a cold, toilet or anything else. Those are all big red flags. And to me, there’s no reason that should happen. So a few other things that can lead to that degree of discomfort or variances for example, which can be seen on ultrasound. So if if that’s not the issue, or if someone is treating that well with nutrition and supplementation, and they’re still, you know, their hormone tests look normal and all of that. That’s where I’m really looking for that index of suspicion and the final thing that tends to overlap is digestive issues. So I certainly wouldn’t skate back, skate past that. So I think the faster we can educate these, you know, middle school health teachers, middle school nurses, that’s where we’re going to make inroads because that’s where it first presents. And most of my patients get really good. You know, like this patient you’re talking about at tolerating pain and powering through it. And they just stopped bringing it up after a while. And that’s the problem. So by the time they’re old enough to like, see, you know, let’s say they actually are seeing a gynecologist who even knows to look for this, which more and more of them do but you know, you might be 22 years old. You’ve had it since you were 1112. You just forget about you don’t bring it up anymore, because, you know, it’s been dismissed. So many times.

P: Yeah, you’ve been told us nothing. So it’s hard to think to bring it up. Yeah. Okay, that’s helpful.

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Episode 28 SN: Outrunning Ectopic Pregnancies is No Small Feat: Kristi’s story

Both of my pregnancies taught me that just because some process is going on in the confines of your body, location does not imply control.

This is also true for my guest today.  To some degree, I think that if her timeline didn’t unfold in the very specific way it did, she would not have ended up where she did–the mother of two healthy girls. On the way to this outcome, she experiences both the best and the worst pregnancy “luck”.  Overall this story is one of good luck, because she is alive to tell it. Today’s guest did not endure one, but two tubal ectopic pregnancies. Often these types of pregnancies can be handled with medication, but if that route fails, as it did in her case, they require immediate surgical intervention to prevent a rupture, which can lead to internal bleeding and other emergency circumstances. Today’s guest was forced onto the hardest route out of an ectopic; and it’s the way she handled these pregnancy complications that makes her story one of incredible perseverance and resilience that she likely didn’t realize she embodied.

pregnancy/miscarriage hormones

https://www.verywellfamily.com/how-doctors-diagnose-miscarriage-2371375

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936313/

IUI

https://www.plannedparenthood.org/learn/pregnancy/fertility-treatments/what-iui

Audio Transcript:

Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette Kamenecka. I’m an economist, a writer, and the mother of two girls, I’ve had three pregnancies, and each one taught me that just because some process is going on in the confines of your body, location does not imply control. This was also true for my guest today.  To some degree, I think that if her timeline didn’t unfold in a very specific way it did, she would not have ended up where she did. The mother of two healthy girls.  On the way to this outcome, she experiences both the best and the worst pregnancy “luck”. Overall, this story is one of good luck, because she’s alive to tell it. Today’s guest did not have one, but two tubal ectopic pregnancies. Often these types of pregnancies can be handled with medication but if that route fails, as it did in her case, they require immediate surgical intervention to prevent a rupture, which can lead to internal bleeding and other complications. Today’s guest was forced onto the hardest route out of an ectopic. It’s the way she handled these pregnancy complications that makes her story one of incredible perseverance, and resilience that she didn’t like we realize she embodied.

 After we talk, I go back and include the insights of a wonderful OB, who’s authored papers on ectopic pregnancy. 

Let’s get to this inspiring story.

Today’s guest and I just fell into our conversation, so I’ll introduce her: Her name is Kristi and she’s from Oregon and here’s her story.

 

Kristi: so my first daughter, we were not planning for. And we were actually honestly not planning on having kids period. That was one of the things that kind of joined me and my husband, it was like we are both on the same page, We’re gonna get married and we’re just going to live our own life and not have children. And then I got pregnant. But it was like this …I’m the one who actually freaked out my husband did not. He was like, Alright, let’s go. And I sort of had to take a moment to realize that this was a new plan for us, and have the smoothest pregnancy, no morning sickness, the only side effect of my pregnancy was heartburn. It was awesome. I loved being pregnant, giving birth was a different story, and honestly even that first birth, even though it didn’t go as planned, like it wasn’t crazy she got stuck and 

 

P: let’s go slower, your water broke

 

K: my water never broke i Okay, so I guess she is a little bit of a story but I was actually four and a half hours out of town. My husband’s grandpa died, and we made the joint decision that we were going to go to the funeral, even though it was the weekend of my due date, I researched the hospital that it was close to, and I was fine with it like if it happened it was okay, we were just going to tackle it as it came and it was fine, managed to go the entire time in that town, and we were on our way out of town in at a gas station, getting gas to head home, and I had my first contraction. So, was in labor for four and a half hours in the car. And 

 

P: did you know what it was?

 

K:  I had had Braxton Hicks, but these were definitely different and I don’t know if I really registered it, but they became pretty constant. And I think they got to within like four or five minutes apart when we were approaching Portland. And we had to make the decision of either turning off and going to the hospital I was delivering at, or going home, we had moved so I lived a little bit far from our hospital. So we opted to go to the hospital, I already had my bag so it was like, yeah, why not, we’ll just, they’ll tell us what we need to do, I think we ended up checking into the hospital a lot about noon on Friday. And it’s weird how this birth is a little bit foggy, I forget little details but when I got in there they let me hang out for a little while the contractions were definitely regulars so they actually ended up breaking my water. And then, obviously, the clock starts ticking, I got an epidural, but it never worked. Fully, so I was having 

 

P: you didn’t feel numb?

 

K: No. 

 

P: Oh

 

K:  it’s funny because now I hear people tell the story about like yeah like I took a nap, and I’m like, what you took a nap. Are you kidding me, so I had to keep having the anesthesiologist had to keep coming in and give me me boosters. So they finally decided to pull it and redo it. So they tried it again, and it’s still never really took effect. So I was in pretty hard labor, until Sunday, so I went with no sleep because I never not felt a contraction so they were coming. And about six o’clock on Sunday we decided we’re far enough along i i dilated I dilated all the way to 10. To start pushing at least try to see if we can make something happen because she just wasn’t really very low but I mean I was dilated so we’re going to try and I pushed for three hours. And my doctor finally it was just like, This is ridiculous. You’re exhausted. Her heart rate never did anything super weird but it kind of did so we just called it and ended up doing a C section, as it turns out. Her head was tipped sideways. So she was pushing with the side of her head she came out with a huge bump on her head where that part of her head was being sucked into the birth canal, but not the rest of her was perfectly big, she weighed eight pounds six ounces, big puffy pink never looked like the old man she’d looked like a baby like fine just took a long time to come out. 

 

P: Yeah

 

K: I recovered from my C section really well, and it was fine. It wasn’t, obviously, my story is always a person ever go the way you plan them, but

 

P: had you imagine like a natural birth or you just didn’t want a C section,

 

K: I just hadn’t planned on a C section, I was C section and my brother was C section, it’s always, it was always there, it just wasn’t the plan. Yeah. When the doctor finally made the call and we were going to have a C section. All of my contractions completely stopped it just stopped and my body was like yeah, thank you. Let’s just get her out. Like, I didn’t have another contraction. So I went into the O R, and never had a single contraction, after they called it. So I was probably ready for that

 

P: Yeah, yeah

 

K:  and recovered just fine and she was totally healthy like that bump went away within like two days and

 

P:  yeah, good 

 

K:she was healthy and, perfect. So that’s my first daughter. I mean a little bit stressful but to me it was nothing serious. I had to have a C section, but whatever, they are super common… So my daughter was about 2 we actually decided we wanted to have another and We tried for probably about six months, I think, and I got, I got pregnant. And at six weeks had a miscarriage. And it was a slow miscarriage, so I found out from the doctor that I was going to miscarry before I actually had a miscarriage my numbers were just dropping.

 

Paulette: So when Christie talks about numbers, I think she’s talking about HCG human chorionic gonadotropin, which is a hormone produced by the embryonic cells that will become the placenta during pregnancy. This hormone generally makes the uterus a happy place for a growing embryo it Ward’s off the mother’s immune cells, it signals to the years that implantation is coming, and it tells the body to make the hormone progesterone, to protect the endometrial lining and avoid a period. Early on the level of HCG roughly doubles every two to three days, and tells you that you’re pregnant, but if the level of HCG doesn’t increase in this way it can signal that something’s wrong. Doctors can take blood tests a few days apart to verify a falling hCG.

 

K: I wasn’t feeling good, I don’t think, and so I literally just waited at home for it to happen because I knew it was coming. And then we just kept trying and we went, I think we went about a year of trying.

 

P: wait, let me back you up here for one second, upset about the miscarriage?

 

K: Yeah, I was, I definitely was but it’s crazy all these people started coming out of the woodwork who had had miscarriages, they’re very common. 

 

P: Yeah, yeah, yah

 

K:  And, but I hadn’t realized it so just having all those people around you, being like, Yeah, I had a miscarriage too but I have three great kids so

 

P: yeah March of Dimes says it’s 50%

 

K:  I wouldn’t be surprised if it’s way more than that, 

 

P: because so many people don’t report or don’t even know. Yeah, 50% is already a coin toss, right, so. 

 

K:  I called in sick as soon as I found out this was happening and I didn’t go to work until it was done so I missed like a week of work, of just basically sitting at home. 

 

P: Yeah, 

 

K: waiting to lose baby which is obviously devastating, and I think because the rest of my story is so dramatic that feels like nothing. 

 

P: Okay, 

 

K: So, after trying for about a year, my doctor referred us to the local fertility clinic, I guess, like first thing she had us do was had my husband go get checked. And so he got checked and his numbers came out good but not good had plenty, but their movement was off a little bit so that raised kind of a red flag, so she wrote, she recommended us to one of two places. I happen to be extremely lucky at the time and my employer covered fertility.

 

P:  Oh wow. 

 

K: Yeah, so they covered 80% I think, 

 

P: wow

 

K:  all fertility, they’re extremely like gay marriage and family, very. Yeah, yeah. So they covered that. So, the goal is to stay employed with them for sure until we figured everything out. So we started with them, and you go through lots of testing, did that if I had completely unexplained. There was no reason that we could tell why I couldn’t get pregnant. So we started with IU I.

 

P: So an IUIi is an intro uterine insemination. Basically the doctor takes sperm and shoots them directly into the uterus with a little thin tube. When you’re ovulating, it can increase your chances of getting pregnant, but in fertility, nothing’s guaranteed.

 

K: And did four rounds of that. So you like do that and then wait a month, you do it again, wait a month so we went through four of that, 

 

P: and you find that  okay?  I did that also…

 

K: I mean it makes sense why they think that would work to me, especially if there’s question on the guide side, we’re just going to help these little guys out and get them right in there to the right place so it makes sense to me why it would work. I don’t know anyone who that has been successful for I’m sure there are people, but the I did not work for me. So, we went through four rounds of it, and then it was decided that we were going to try IVF. So, I, I learned the hard way that I don’t like giving myself shots. I know other people who went through it, but the idea of everything that happens, and I’d say now I should have written all of it down but I didn’t…it didn’t feel necessary  for some reason. So, our first round of IVF was successful. 

 

P: Oh wow, 

 

K: I got pregnant. You go through the whole process of them gathering the eggs right so a horrible part of blowing up and filling yourself with as many eggs as you can get.

 

P: I talked to one woman who said she could feel her ovaries, they got so big that she felt like said like well walking around, you can kind of feel them.

 

K: It is crazy it is a weird feeling. I don’t know if I could feel them but I definitely just felt like bloated and uncomfortable and like this is not normal. 

 

P: Yeah, 

 

K: after they take them out and they, you know, get rid of the ones that are definite no’s. Yeah, we ended with nine. We opted to do the genetic testing. I didn’t feel like after all of this, why would you put in one that’s not 100% 

 

P: Yeah, 

 

K: so, and I had the health coverage so I get, like, not doing it because it’s expensive, but we had the health coverage so that left us with four. 

 

P: what do they test for? 

 

K: So, they test for any genetic anomalies, so if there’s anything that sort of looks like it’s, it could possibly be rejected by your body. Because of a genetic mutation.

 

P: Yeah, 

 

K: it’s pulled. 

 

P: Okay, so it’s broad is pretty broad,

 

K: it is broad… I think, Because like we ended up with four super healthy, these are the best of the best of your, of what you got. And so we had four and we knew those, those are your four chances, we knew we had three boys and one girl, because part of the genetic testing is knowing exactly what sex you have, so we go the first round, and they’re doing lots of tests up to the point before they put that egg in. And I had fluid in my uterus, and I took a specific type of medicine and to try and get rid of that fluid, and like the day before we were going to put the egg in the fluid disappeared so that medicine we’re assuming works, so put the, again, I get pregnant. Everything seems fine. I get to, I’m pretty sure it was week six, because that’s, that seemed to be my magic number, and I call it was at work, and I call my doctor because I’m having like weird pains in my left side and it’s kind of going down my lane, which also feels weird.

 

P: Today I’m bringing questions about Christy’s experience to Dr. Tanya Glen. She’s a published author who’s written and researched about ectopic pregnancies, and is currently a fellow at Yale’s reproductive endocrinology and fertility clinic. Hi Dr Glenn thanks so much for coming on the show. 

 

Dr. Glenn: My pleasure 

 

P: in Christy’s case, she gets pain of her leg. Why does an ectopic cause that kind of pain.

 

Dr. Glenn: It’s not necessarily that every ectopic would cause that specific type of pain. And so, could very well be that if it was a ruptured ectopic already, the blood in the abdomen could cause irritation down the leg, but the majority of time when people have a ruptured ectopic they’ll have abdominal pain. That’s not a symptom that I get often from my patients usually it’s abdominal pain.

 

K: So I call them, just because I didn’t actually know if there was anything wrong but I called them and they tell me to come in. So I go in, and he breaks the news to me that he’s pretty sure I’m having an ectopic pregnancy. The embryo has went up into the fallopian tube and I’m gonna lose the pregnancy. He calls my doctor and my doctor wants me to come and see her, so she’s taking space in her schedule and she has me drive to her office from the downtown office to come see her, so it’s confirmed Yes, this is an ectopic pregnancy

 

P: Did they do an ultrasound?

 

K: Yes, They did an outside and a vaginal ultrasound. So you’re going to lose this pregnancy, we can help you along with this so they schedule me an appointment at the cancer center, but I can’t get in until for this is like new. So like for, you’re going to drive to the cancer clinic, and you’re going to go in and you’re going to get this medicine that is basically like a chemo medicine it’s going to make your body reject the pregnancy and your system will just flush it out. So that’s the plan like.

 

P: So Christy’s ectopic is going to be resolved with medication. What do you think the doctors gave her and how does it work, 

 

Dr. Glenn: people that may be having a ectopic that was treated like she was with medication first which is called methotrexate and attacks rapidly dividing cells, it’s actually used also for chemotherapy but we use it for tech topics we use it as a much lower dose, But attacks rapidly dividing cells and we’re gonna think about that, that also can cause pain itself. So most of my patients who get methotrexate will feel uncomfortable, you know, they’ll have some cramping, they might have back pain and it is just all kind of response to maybe having some bleeding, and that ectopic pregnancy or that pregnancy that’s not inside the uterus is resolving and those cells are dying, and that causes pain,

 

K: I have nowhere to go because I live so far from work so I go back to work, and hang out until I’m supposed to go, and my husband’s at work and I’m reassuring him that like I can do this just meet me at home. There’s nothing you can do, take care of, you know, our oldest daughter, and just be there when I get home. So, I go to Portland, get two shots, one in each butt cheek. By this time, I’m in quite a significant amount of pain, I remember not being able to get comfortable in. On the bed that this clinic is having me sit on and like I’m finding weird positions to sit so it doesn’t hurt, and it takes a long time by the time I’m driving home it’s dark, so I’ve had to wait so long at that clinic, it’s all the way on the other side of Portland so I’m having to go through Portland and to the other side to get home. They’ve prescribed me Vicodin, and something else for nausea. So Vicodin for the pain and something else for the nausea, because I’m, I’m just not feeling good, it’s super super painful to medicines I’ve never taken before also. So, I don’t know if you’re familiar with Portland but to get from one side of Portland to the other you drive through a tunnel. I just remember that when I went through the tunnel. I was in so much pain that I was basically driving with one foot pushing on the dash and one foot on the gas pedal because I, the pain was so excruciating, but

 

P: Did they  tell you that would happened, 

 

K: yeah that’s that’s why they gave me the Vicodin, it would be really painful. Not that I have no frame of reference,

 

P: yeah. 

 

K: What is too much pain, what is normal. Yeah, they said it would be painful, so this must be right. 

 

P: Yeah. 

K: So I still have to get to Safeway actually to turn in my prescription so that I can get this prescription so I can go home, so I have a standing job that I probably looked like a drug addict, by the time I got to Safeway, but I go to Safeway, I’m in my work clothes but I am sweating. I constantly have this rolling sense of feeling like I’m gonna throw up, which I’m thinking is because it’s so painful. So I go into Safeway, I literally like lean on the counter and hand them this prescription for Vicodin

 

P: Yeah, 

 

K: I’m sure. They’re like, yeah, lady. You’re a complete drug addict. 

 

P: Yeah, we’ll definitely fill this. 

 

K: Yeah, we’ll get right on that. Yeah, they told me it’s gonna be a half hour. So, I just go out to my car, I sit in my car, I get out of my car twice, and go into the Safeway bathroom convinced I’m going to throw up. I don’t go back, sit in my car, I’m sweating. I’m in pain, finally go in, I get the prescription. I go home. I take one nausea medicine, two vicodin, and I tell my husband and going to bed. I’ve never taken Vicodin before. I don’t know I don’t know what’s gonna happen, I go to bed and I go to sleep. I kind of remember him coming in and going to bed. I mean he’s clearly worried, but we also have a two year old in the house. 

 

P: Yeah, 

 

K: so he’s, you know door, trying to keep it together and trying to keep her, you know, Kara, wake up at like 11 o’clock. And I think I’m gonna throw up. And I remember getting up grabbing the closet or cuz I feel like I’m gonna fall over. And that’s it. The next memory I have is laying on my bedroom floor and there’s a fireman above me, sitting, sitting on me. Apparently what has happened is…

P: Goose bumps! Yikes…

 

K: Yeah, literally, so my husband heard me, thank God, fall into the bathroom. It was a really, really small bathroom so I’m laying in the door and he kind of wakes up and he’s like Christie What are you doing, don’t answer. And he turns on his light, and gets up and I’m laying in the bathroom door, and I’m unconscious and not breathing. Thankfully, my husband used to be a paramedic, so he grabs my shoulder he yanks me up, he’s pretty sure he pops my shoulder out of socket, but he doesn’t get to me over and into our bedroom. And that movement. I did throw up, but I aspirated it… so gets me breathing is yelling to our two year old to wake up to go get him his phone. She never wakes up. 

 

P: Yeah, 

 

K: so he leaves me for a second, goes and get this phone comes back and he’s calling 911 calls 911 hangs up with them, they’re on their way, he calls her friend to come over because he needs somebody to stay with her. My friend comes in, goes directly into my daughter’s bedroom shuts the door and sits on the floor and just doesn’t leave her. So I, when I wake up, my blood pressure is like 30 over 60 

 

P: Oh my god, 

 

K: I’m in really, really bad shape. So because my husband was a paramedic, they give us the choice of them either him driving me or them driving me to the hospital, we don’t know what’s wrong with me but my husband decides, we decide, I don’t, I wake up at one, I don’t care. I remember being like, yeah. Hey, how’s it going, it’s firemen and looking at my hand and realizing there’s like throw up in my hair and just been like yeah that’s okay that’s been going back wanting to go back to sleep on my floor. I don’t care what’s happening, I don’t care I just want to go to sleep, so they carry me down in a, in a sheet, my husband and two firemen carry me down our stairs and put me in my husband’s car. And he drives me to the ER, I kind of remember the drive but i All I remember is laying on my side and putting my feet on the dash and pushing on it because, again, my stomach is hurting so bad. We get to the ER, and I remember, a doctor coming in, and I’m doing an ultrasound on my stomach. Leaving really quick. And another doctor coming in, and then doing another ultrasound. And then I don’t remember anything until I woke up, so all I know it was really bad, and my whole abdomen was for full of  blood basically fluid. So my fallopian tube had ruptured, probably on the drive. That’s why my pain, suddenly got so bad, and I bled it, I was bleeding internally that entire time.

 

P: Here’s what Dr. Glenn had to say about how a ruptured fallopian tube behaves….

 

Dr. Glenn: What I’m really concerned about is, let say it ruptures, and you start bleeding because a tube has a lot of blood supply to it..it’s delicate, and it bleeds if you look at it wrong, and so if people are bleeding from that, they are going to continue bleeding

 

K: So when I woke up. My husband had apparently had a breakdown at some point in time and was calling on my family and crying and they had given me, 2  liters of blood 

 

P: for context here. According to medical news today the average size woman has 4.3 liters of blood in her system 

 

K: and removed that fallopian tube….I survived and woke up with my doctor,

 

P: wait, let’s let’s pause for one second here. I can’t believe you have another child. 

 

K: I do, yeah. 

 

P: So I’m just gonna say it’s amazingly brave to go back into the breach, 

 

K: yeah.

 

P: to say like yeah let’s try it again. 

 

K; Yeah, 

 

P: that’s so scary, Oh my god.

 

K: Yeah. Yeah, that’s probably the scariest. 

 

P: Also, the cancer drugs methotrexate isn’t what it is I,

 

K:  you know what I couldn’t even tell you. But I, I know you were like,

 

P: did it not work?  do they know what went wrong, 

 

K: it was too late. So they gave me this medicine, But it was too I was, it was too late. I was too far along, and too far past that point, that’s the answer I’ve been given is that if I had caught it like a little bit earlier, even hours earlier, it might have worked but I was too far along, for it to actually be able to reject.

 

P: So you’ve identified a tubal ectopic, is there any way to know how close the tube is to bursting.

 

Dr. Glenn: No, that’s the hardest part I think about we call them pregnancy but unknown location. So in Christie’s case I’m not sure if they actually saw like a mass in the tube. A lot of times we don’t we have to kind of go empirically like our ultrasounds are only so good, now they’re so much better they keep getting better and keep being the detect things that are smaller and smaller. But sometimes if their hormone pregnancy hormone levels too low, like it’s rising up normally that’s too low, we’re not gonna see anything that to 

 

P: roughly how big is the embryo at this point 

 

Dr. Glenn: three to five millimeters. 

 

P: Okay. that’s tiny

 

Dr. Glenn: It’s very tiny. Yeah. Now, let’s say her pregnancy hormone level was very high. That was kind of a relative contraindication to getting methotrexate, we say if it’s over 5000 or we see a heartbeat, in the, like, called adnexa which is in the tube or outside the uterus, those are relative contraindications to getting methotrexate, but they’re not absolute because some people really want to avoid surgery. There’s risks and benefits to both, but there’s no way to know that tube could be rupturing, as I’m seeing her, and she might feel fine that point, we do know that ectopic pregnancies can resolve on their own, and one that happened in the tube, when their pregnancy hormone level is very low like less than 200, about 80% of those will actually resolve without any medication intervention, It kind of extrudes out the tube and gets absorbed by the abdomen.

 

P: so then you had the burst fallopian tube on top of chemotherapy Vicodin and nausea medicine. Yeah,

 

K: to say the least, I, I pretty much I’m petrified to take it again, and just don’t want it in my body

 

P: that seems fair. 

 

K: I’m sure it has nothing to do with any of it but all the medicine that was involved with that little window of time I never want in my body ever again. 

 

P: Yeah, I feel like that’s fair. 

 

K: Yeah, so there’s lots of checkups that happened after, obviously I now have chemo medicine in me so even the thought of trying to have a baby again isn’t going to happen three months I think took three months for that to be completely out of my body,

 

P:  I know there are risk factors for ectopic Did you meet any of those risk factors?

 

K:  no 

 

P: In the published literature I saw about risk factors, there are a wide variety of things linked to ectopics…so I took this question to Dr. Glenn: What are the risk factors for ectopic pregnancy?

 

K: Actually, infertility, just in general is a risk factor. You have tubal factor. What that means is, if we know your tubes are abnormal, you know, if you’ve had pelvic inflammatory disease that can actually affect the tubes cause the tubes to become dilated and fluid filled, and they have cilia and your tubes to help sweep along the eggs kind of  like brooms. And we know that if there’s fluid in there, those can disrupt the. Yeah. And so, tubal factor being that we know that the tubes are not normal, increased risk for a topic, even if we do IVF, and we’re actually avoiding the tubes in general, still an increased risk. Other things were kind of unsure about why infertility itself is causing it. Even people with unexplained infertility, maybe they have some underlying factor in their uterus that doesn’t make it a good environment for an embryo implant or there is something in the tubes that we just don’t know yet. One reason I love and it’s frustrating about my field is, it’s so much unknown still. And so, you know, other things people realize that our risk factors is smoking, endometriosis….And then we also know you know that there has been an association between doing IVF cycles your hormones get incredibly high. We know that actually increases risk for ectopic that has been shown to I should say, but we don’t really know why, but about at least a good 50% of people that topics have no risk factors.

 

K: The thing that we come up with is that this mystery fluid in my body was coming from my C section scar, from my first daughter, I never healed completely on the inside so weird fluid from this scar from years ago was seeping into my uterus and the embryo didn’t like that fluid, so it was running away from it.

 

P:  Okay. 

 

K: And the only way to go was up. So, ran out and into my fallopian tube. Nobody knew that. And on every, you know, scan that I had and everything we could hear a heartbeat and, but we didn’t know, I mean there was no way of knowing where it was sitting. 

 

P: Yeah,

 

P: So the theory about why this happens to Christy is that her previous cesarean scar led to fluid in her uterus and the embryo was making implantation decisions based on the fluid in the uterus, I mean, that brings up all kinds of questions like how we’re as the embryo figure out where to implant, 

 

Dr. Glenn: yeah 

 

P: I did a brief literature search for that and couldn’t find anything in humans, but in animals, there’s all these suggestions that the placement of embryo implantation is pretty consistent across animals suggesting that something is guiding the embryo to figure out where to implant.

 

Dr. Glenn: Yeah, and is it like a chemo some kind of chemo attractant, is it the receptors that are have on their endometrial receptivity, is a huge area in our field because we know that in IVF it’s like if we have a let’s say a tested embryo, which is, you know when the eggs and the sperm come together and fertilize that egg. It will grow and become an embryo and usually about five days after that so Lightstation is called a blastocyst and that’s when we will put it back into our patient usually the day three or day five, we can test those embryos to see if they’re completely normal. And we can have normal embryos not implant. So we know there’s a lot of underlying factors about the receptivity between an endometrium or the uterus which enemies from being the lining of the uterus and the embryo that we just don’t understand yet, is why even with IVF, you know, even in let’s say a young patient 30s or, you know, Overall, the success rate per cycle of placing that embryo back in. It’s only 50 to 60%. There’s so much we don’t know yet. The embryo that doesn’t know how to attract the uterus, or the uterus, that’s not having all the right factors or adhesion molecules to actually be receptive to the embryo.

 

K: So, there’s a surgery, you can have done where they go into your uterus and they burn each side of your scar to seal it up. So, after all of this happens, I have that surgery. So I go see a specialist for the basically cauterize around your the scar to make the skin fused together so now that it’s just like in a little pocket, and not releasing any fluid into the uterus

 

P: does that hurt, or No, 

 

K: that wasn’t too bad actually. There were the recovery was super minimal, they go, I’m trying to think, I think they go in through your cervix. 

 

P: Okay, so they don’t have to make an incision or anything. 

 

K: No, so recovery super easy. I don’t remember that being bad at all. 

 

P: Okay. 

 

K: We tried the idea of another idea first and instantly rejected wasn’t a, I didn’t get pregnant, or anything it just didn’t take. And then I had the surgery to take care of that, because that fluid kept showing up. So, this is the determining factor since I had nothing else. 

 

P: Yeah, 

 

K: so I do the surgery where we seal off my scar. And we have, I have two more embryos, I have a boy and a girl. So because we’ve tried boy boy, we’re obviously going for boy. So when we decide that since nothings working. We’re going to put the girl in. And it’s sort of like our, like if it’s not going to work. Let’s try it with the girl. Yeah, which is horrible thing to say because now I have a daughter, but it works. And so we’ve sealed off the, this, the scar, and I get pregnant. And I remember standing in my bedroom when they call you right to tell you your numbers, that’s how you find out if you’re pregnant or not, and my numbers being crazy high, and it was like, YOU’RE NOT PREGNANT like you are 100% pregnant. Even with the like first pregnancy my numbers weren’t this high so it was like, this was the best possible thing like you are, you’re definitely pregnant. Yeah. Like, I’m not pregnant until I passed six weeks, just so you know, but I do, and I totally have another perfect pregnancy, again no morning sickness, no, I make it all the way, I graduated from my fertility clinic you graduate after the first semester you get to leave your fertility clinic and go to the regular doctor and I remember that day happening and everyone in the clinic cried my doctor cried. The person who was taking my blood every freaking day was crying like the receptionist cried, everyone knew what I had been through the whole office knew that that was like my last appointment. And it was the most amazing craziest feeling I was like, you see ladies with real bad shit. And you’re crying because I’m leaving, so this is a big deal. So, I remembered like starting with my regular doctor and it was great, the birth was completely different but still ended in a C section, but I had a doula, this time for my second daughter, the entire birth situation was completely different and 100% Amazing, with my second daughter, It still ended in a C section because I got a fever and she, her heart rate started getting weird. But I went to the hospital at 4am and she was born at 8pm. 

 

P: Oh, that’s not so bad. 

 

K: Right. That was like my water broke naturally, I got to walk around and I was had her over the toilet because I my water broke and I went from like four centimeters to 10 centimeters and the time it took me to go to the bathroom and come back. 

 

P: Wow. 

 

K: Yeah, but it was like all fine. It was amazing. Completely different this, she still did ended up having to be a C section but she was, it was still fine, and

 

P: wait, how we feel about the C section after the fears about the scar.

 

K: Well, we were pretty sure we were not having any more children at this point. 

 

P: Okay, 

 

K: and my and my doctor was well aware of whole situation. We made sure she knew I apparently don’t heal very well, we need to be like extra clean and clear on what’s happening on the inside of my body, so I felt like I had a lot of confidence in my doctor, so I mean it’s obviously not ideal, but I can’t get pregnant naturally so that’s what how me and my husband were thinking is like, its gonna be fine because we’re pretty sure we’re at the time, we were pretty sure we didn’t want to go down this road again.

 

P:  Yeah, 

 

K: this is it, and this is going to be amazing and our family is complete, still have one more embryo, but we weren’t even completely sure that we wanted to use it, and we had talked about what we were going to do with it. So to me it was okay. Again not ideal, it wasn’t what I was going for. I was pretty damn determined to have her naturally, actually, all the way to the point of seeing her head, and my husband could see her head. The biggest difference was, by when we decided we were going to call it and do a C section. I kept having contractions this time. So, laying outside the ER, completely flat because I’m getting ready to go in and still having contractions and being on the bed with the sheet up and still having contractions like that part was weird this time. And because she was had really gotten all the way down there, they said they like had to go in and get her, and pull her out of the birth canal this time we’re just he was just like, right there ready to hold out I recovered from C sections pretty fine. I’d never, like, say that you can really tell, I don’t have this car like it’s fine. We Bring her home, but we have to make the decision, we paid for the storage for the second embryo for quite a while, and made the decision to donate it to science so we did that, and then, so my second daughter was born in April of 2018. So February of 2019. I start having really crazy stomach pains, and they last for like a week, but they’re weird and I tried, I tried every medicine you can name for every stomach ailment you could think of, we finally decided I’m going to go to zoom care, and just going to get checked out that we can a car but I figure that’s just for like checking for different things and the doctor comes in is like, I have good news and bad news. The good news is you’re pregnant. The bad news is, because you have a history of ectopic pregnancies, I think you need to go to the ER. So I leave there immediately and call my husband and start driving to the hospital, 

 

P: wait, let’s pause here for one second, I feel traumatized by this news, are you traumatized.

 

K; Oh yeah. Oh, and this is impossible because I can’t get pregnant. So, this never crossed my mind that this was what was wrong with me. 

 

P: Yeah. 

 

K: So I tell my husband in the exact same way. Great news. I’m pregnant. Bad news I’m on my way to the ER, because they’re pretty sure I’m having another ectopic, but the pain doesn’t feel the same, so I’m like, I’m confident that, like we’re catching it in time, like this is gonna be okay. So my husband meets me at the ER, and we are sitting in the ER at a table and I have a glass of water, and my husband watches me change color, and almost fall out of my chair which is the exact moment that my fallopian tube ruptured again. So he goes and gets the doctors, 

 

P: I hope you went and bought a lottery ticket after this. 

 

K: It’s my, my second daughter is the definition of a miracle pregnant. Yeah, because, literally every pregnancy before her, didn’t work, and the pregnancy after her. Didn’t work. 

 

P: Yeah, 

 

K: and they two on either side of her literally almost killed me. 

 

P: Yeah, 

 

K: yeah.

 

P: So you, you fold the ground I assume that helps you to skip the line of the ER,

 

K: you skip the line magically Yes, you instantly get a bed, which is pretty amazing. And they did a lot of scans, I feel like I was in the ER, a lot longer this time because it hasn’t had a timeframe so like it just ruptured. 

 

P: Yeah, 

 

K: so the process of bleeding internally and stuff is happening in hospital. I still get two more liters of blood. I still have all of that stuff happen. I know I have no fallopian tubes, so I really can’t get pregnant now, unless I were to do IVF again, which obviously I’m not doing the fact that it happened twice, I guess that never happens. Yeah. Never. And even the doctors at the hospital were like this doesn’t happen. You can’t have this happen two times. So I now have two beautiful daughters. And that’s it. 

 

P: Wow. 

 

K: Yeah.

 

P: So you this one the certain they did surgery immediately you recover more easily.

 

K: Yeah, I mean it’s the recovery is pretty the same surgery is done with it orthoscopic Lee Yeah. So, I already have the scars pre made for them they just have to go into the same place, and they take. Yeah, they take that one out. Also, though.

 

P: So, so no one can explain why this happens again,

 

K: I mean the only thought is that, you know I had a C section with my second daughter, so is it just that same thing, and I just really don’t feel very well. So, I mean that’s all we can think of.

 

P: Clearly Christie had a pretty unusual experience, and I’ll talk to Dr. Glenn a little bit about that in a second. But one of the other things that’s clear from this experience is that there are a lot of unknowns in this area of medicine, and we may never be sure about why these two ectopics happened. Having said that, it sounds like Dr Glenn may have a slightly different theory. One of the risk factors for ectopic is previous ectopic which suggests that people are having more than one. 

 

Dr. Glenn: Absolutely. 

 

P: So, is this unusual for you or what’s your experience

 

Dr. Glenn:  overall, you don’t see people with multiple ectopic pregnancies in a row, but since this is kind of my patient population is infertile. Then I see it at probably a higher rate than majority of providers, but yes definitely just like so many different things in medicine, the one of the biggest risk factors is prior history. And so prior history of an ectopic definitely increases your risk so if you have a history of ectopic, you have a 10% chance of being a second topic, so you have to make topics, you have a 25% chance. And that’s because an ectopic pregnancy is already telling you you have something abnormal with your tube, 

 

P: it’s crazy. That is totally crazy, and I would never have known that those are the only surgeries I’ve ever had and 

 

P: my experience with the infertility stuff is that they know a certain amount, but beyond that, they don’t really know what which is why would you say to me like I can’t get pregnant without IVF, I think, of course you can right they just, they didn’t find your problem so they don’t entirely know what it is and, 

 

K: yeah, 

 

P: my guess is that is most people right if you pass all those things right like I passed to and then it turns out I have an autoimmune problem, which we found in the pregnancy when I tried to kill my daughter right like but I was totally cleared, they said like, oh you’re sitting, you know, we check the five things we’re gonna check for everything’s in working order. Goodbye. Good luck, 

 

K; Right, it is no, even the conversation I remember sitting in the like seminar that they do for the fertility clinic where they talk about, you know, it’s like the little class you go to before you actually are a patient, it’s like to introduce you to this clinic and they go over how a baby, actually, is made craziness of how actual impossible. It is, 

 

P: yeah,

 

K: you don’t know that until you sit down and somebody tells you exactly what is happening in your body, to make this happen. Here there’s so many people.

 

P: Yeah, I totally agree. I’ve just seen response like how is any baby born, how does it work, 

 

K: how does anybody actually have a baby. Yeah, yeah, 

 

P: there are a million complicated steps so it is easy to imagine that like, you know, you will be able to pinpoint all of them unless you have some obvious problem. Yeah, you know you won’t know what’s going on, both of your daughters seem kind of miraculous. Yeah,

 

K: I mean, and I funny thing because we’re my daughter’s, you know she’s eight and we’re getting to the point where she’s asking some questions and I had this realization, laying in bed the other night that when she finally does want to hear the story and want to learn how babies are made. I have two amazing stories. Yes, they, she gets to hear how the story of her and she gets to hear the story of her sister. She doesn’t necessarily yet have to understand all the things that happened in the middle but they’re both two amazing stories, yeah, yeah,

 

P: that is amazing what was the eight year old into.

 

K; She wants to be a vet, 

 

P: that’s fun. 

 

K: Yeah, she’s super into animals, and she takes horse riding lessons and play softball, 

 

P: that sounds busy. 

 

K; Yeah. 

 

P: What about the two year old What are her latest tricks. 

 

K: so my two year old is our firecracker. She is 100%. And they’re, They’re very different personalities. So, my oldest name is Josie and my youngest is Cody, one is soft spoken and sweet and nurturing and loving and one is a terror of my house. Yeah. she earned it I guess,

 

P: yeah, she totally did 

 

K: oh my god she totally did. Yeah, 

 

P: that’s awesome. That’s a great, that’s a great and triumphant story.

 

K: Yeah, it’s pretty crazy. I feel like I should like be doing more things. I almost died twice, I should being doing something. 

 

P: Well you I mean you have had two amazing children that’s right yeah, but I think you should play the lottery. I think you really have like access to numbers that the rest of us don’t right 

 

K: something, there’s something, right, yeah. Oh, yes, 

 

P: your story is a huge story of triumph, right, it’s amazing that you guys are. Everyone, like your kids do not bear any of the marks of your experience, 

 

K: no, 

 

P: which is amazing, right.

 

K: Yeah, I have two very perfectly healthy children. 

 

P: Yeah, that’s awesome. 

 

K: Yeah, they I have scars and things and, you know, I have no fallopian tubes, but they are perfect. 

 

P: That’s awesome. Totally awesome. 

 

K: Yeah, it’s pretty crazy.

 

P: So let me ask you one other question if you could give advice to your younger self, what would you, what would you tell her

 

K; Don’t ignore stomach pain.. It’s funny because I so my, my thing now is always, I didn’t want kids. Oh, look at what I went through to make sure I had to. Yeah. Like, I clearly did want kids, and they’re definitely my proudest, most amazing thing I would never ever change. Yeah, super. Like it never goes as planned. Yeah, 

 

P: there’s no plan, there’s no, no,

 

K:  I had a birth plan with with my children, I wrote it all out.

 

P: Yeah, yeah. 

 

K: Nope. It would be having no plan, 

 

P: right, your body’s going through so much transformation there is the sense of a loss of control or all these things are happening inside you that you literally there’s nothing you can do. Yeah, so the birth plan sort of makes psychological sense at the very least to say, you know at the end of this long process. This is how it’s going to go.

K:  Yeah,

 

P:  at least in your mind, as long as you’re able to give it up in the last minute when it doesn’t happen.

 

K: Yeah, I think my biggest recommendation, this would probably because I know I know lots of people have different things but I was so sure that I understood the birthing process with my first daughter, that in the, in the room with me and my sister in law, and my husband, obviously. And after having her. I decided with my second daughter to have a doula. And the reason for having her was that, I then learned that I’m in the middle of a situation where I cannot be my own voice. 

 

P: Yeah, 

 

K: and I need somebody to be there to be my voice, who’s not my husband, who’s not my family member, but understands what’s happening, and can be a voice of reason and that’s 100% what she was,

 

P:  it makes sense to have an advocate, I think you don’t realize the first time that you will need one. Yeah, because you think I’ll be totally in control, which I know people do. Yeah, and it’s useful to have someone who’s seen 100, who can say like this is, this makes sense or this doesn’t make sense yeah that’s good advice.

 

K: Yeah, she was amazing, and I recommend her to everybody now, so having that person who will this person literally dropped on all fours in the waiting room so that I could lean on her to have a contraction. Like, that’s the person you want in your ballpark,



P: yeah, yeah, that sounds like good advice. Yeah. Awesome, well thank you for telling me your story. I’m so glad to see you looking very vital. And that’s all kind of behind you now. So I didn’t catch Kristi’s sign off on tape, but 



P: I’d like to thank her again for sharing her story and to Dr. Glenn for her medical insights, Christy describes her children as the miracle. And on some level that’s true to grow a child from seed is nothing short of miraculous, especially given some of her specific circumstances. But hearing this story I really think it’s Christy’s response to all these overwhelmingly challenging obstacles. That’s miraculous and I found it totally inspiring.  Thanks for listening. If you like this episode, feel free to like and subscribe to the podcast, you can find detailed show notes at war stories from the womb, calm, and if you’re interested in sharing your story there’s a place in the website to contact us. We’ll be back soon with another inspiring story.

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Episode 5 SN: Dreams Come True X2: Danielle

Teenage girls are repeatedly told that pregnancy could fall on them at any moment. Caution is the watchword. But often when those young women grow up, pregnancy is nowhere to be found. That was the experience of today’s guest. When she and her partner set out to start a family, month after month, the pregnancy tests were negative. After some fertility testing the doctors believed that they had nailed down the issue, and almost as soon as it was discovered, my guest got pregnant, and her son was born 9 months later. When her newborn was 6 months old they set out to have another child, only to be stymied again. They undertook the challenging and expensive processes of IVF–which did not end in a pregnancy.  Once she had emotionally accepted that she would not have another child, she got pregnant again. She and her partner then went on to help another couple realize their dream of starting a family in a way that could only be written by the fates. Listen to her inspiring story.

Sperm count

https://www.mayoclinic.org/diseases-conditions/low-sperm-count/diagnosis-treatment/drc-20374591#:~:text=Normal%20sperm%20densities%20range%20from,million%20sperm%20total%20per%20ejaculate.

Brief description of IVF  

https://www.pennmedicine.org/updates/blogs/fertility-blog/2020/april/how-does-the-ivf-process-work

Cost of IVF

Gentamicin and deafness in children

https://www.newscientist.com/article/2210246-a-type-of-antibiotics-can-cause-hearing-loss-and-now-we-know-why/#:~:text=Benefits%20for%20newborns&text=However%2C%20researchers%20know%20that%20aminoglycosides,otherwise%20healthy%20full%2Dterm%20babies.

https://advances.sciencemag.org/content/5/7/eaaw1836

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938424/

Connexix 26 and hearing loss

https://www.californiaearinstitute.com/ear-disorders-connexin-26-bay-area.php

https://www.cdc.gov/ncbddd/hearingloss/freematerials/parentsguide508.pdf

How common is IVF/embryo adoption

https://www.cdc.gov/art/artdata/index.html

https://www.cdc.gov/art/state-specific-surveillance/index.html

https://www.statista.com/statistics/1032298/number-of-assisted-reproductive-technology-clinics-in-the-us-by-state/

https://opa.hhs.gov/sites/default/files/2020-10/opa-embryo-adoption-awareness-program-50th-2020.pdf

Dr. Michelle Hu, Facebook page

https://www.facebook.com/mamahuhears

Audio Transcipt:

P: Hi welcome to war stories from the womb. I’m your host Paulette Kamenecka. Teenage girls are repeatedly told that pregnancy can fall on them at any moment. Caution is the watchword but often when those young women grow up, pregnancy is nowhere to be found

This was the experience of today’s guest. When she and her partner set out to start a family month after month, the pregnancy tests were negative. More than a year went by without success

They did what many people in this circumstance do: they looked for medical help with infertility. But this is where their story strays from expectation. Their path to pregnancy was a in no way typical, highlighting the limits of our knowledge about fertility and it ultimately gave them a new perspective on what it means to be a family

After our conversation, I went back into the interview and included information about some of the medical issues we discussed. I also interviewed an audiologist to learn about hearing loss and the latest Technologies in that field.

Let’s get to the interview

Hi welcome to the show. Can you tell us your name and where you’re from?

D: Yup, my name is Danielle and I am from Kalamazoo Michigan

P: Nice, and Danielle, how many kids do you have?

D: I have two kids, book boys ages, 6 and 3.

P: so young….before you got pregnant what did you think pregnancy would be like?

D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.

So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.

P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?

D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.

P: Yeah, was it easy to get pregnant that first time?

D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.

P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?

D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year.  We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.

P: Yeah, the testing is not…not as fun as you might think it would be.

D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive

P: totally

D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on.  My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out.  They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.

P: So it sounds like they figured out what the cause was.

D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.

P: Oh wow

     it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen.  You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.

D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.

P: Yeah, yeah that’s a little scary.

D: Yeah

P: How did he take that? Was he ok or it was upsetting or…

D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him

P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic

D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him

P: Yeah, that’s super hard…although, spoiler alert, it does work out

D: Yeah, it does

P: okay so so how did you guys get pregnant?

D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF

P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta.  Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.

D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.

P: what’s what’s FET?

D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier

P: yeah

D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy.  Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.

P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless

D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….

P: Yeah

D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?

P: Yeah,

D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice

P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?

D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.

P: No kidding!

D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks

P: wait, what does that mean? That means right when he was born he had pneumonia?

D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience

     P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the  neonatal Intensive Care Unit, the NICU

D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult

P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…

D: Yeah…

P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?

D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say

P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…

D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..

P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?

D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out

P: So what’s the other issue altogether?

D: He was born deaf.

P: oh wow

D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children

You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness. 

But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics

D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children

P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.

D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.

P: Wow. That is a lot of a lot to take in and the beginning.  Did you guys sign with him before the implants or like how did you communicate?

D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.

P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.

Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.

P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.

Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process.  It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.

P: Yeah…

Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.

P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?

D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.

P: the cilia are the little hairs?

D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.

P: Yeah

D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.

P: So let’s talk about cochlear implants…

Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear.  The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.

P: Wow, that’s amazing.

Dr. Hu: It’s pretty cool technology.

P: It’s super cool is there, a surgery to affix the outside portion? How does that work? 

Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.

D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.

P: That’s amazing.  What was it like when they turned the sound on?

D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.

P: Yeah

D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.

But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing

P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.

D: Yep. Yep.

P: And it doesn’t have any effect on balance or anything like that.

D: Nope. So they say that some kids can develop like headaches and stuff down the road.  And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.

Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go.  But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.

P: Yeah

D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.

P: In your time being an audiologist I bet you’ve seen like changes in technology.

Dr. Hu: Absolutely. Oh my gosh.

P: Can you tell us a little bit about that.

Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found.  We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.

P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.

D: Absolutely

P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s

Exactly how you’d want it to work out.

D: yup, absolutely

P: So one of the kids into.

D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy.  I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,

P: that sounds fun.

D: Yeah.

P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.

D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future.  But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.

P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.

D: Yeah.

P: Why don’t you tell us about that.

D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene.  They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..

P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those

D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,

P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.

D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.

P: Yeah.  It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.

D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.

So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,

P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,

D: my husband and I? yeah. So we decided on doing this when our youngest was one.  It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will.  And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.

P: Yeah.

D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing.  And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process.  And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it.  And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.

P: That’s amazing.

D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.

P: Oh wow

D: and the husband’s a pastor. So, if anybody could handle

P: yeah

D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.

P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.

D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.

P: That is amazing. How old are the girls?

D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,

P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…

D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.

P: That’s amazing. Have you met them in person?

D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.

P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing

D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with

P: Wow,

D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.

P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.

D: Yeah,

P: and embryo adoption is less it’s less expensive than IVF?

D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.

P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story

D: I really thank you for having me and letting me share it.

P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.

     Transcribed by https://otter.ai

this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection

score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%

specific genetic mutation has caused deafness in Danielson

jb2

which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning

because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old

Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery

pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work

thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral

what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to

elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there

and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest

you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information

does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or

do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims

what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing

is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants

he’s gearing probably imagined won’t change like other people as you age

it’ll have any effect on balance or anything like that

and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first

you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing

audiologist I bet you’ve seen like changes in technology absolutely

the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds

definitely improved. So many people in my eye

whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to

is really lucky when you have an issue to have a comment on right

figure it out

Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF

yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you

these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption

adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility

emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say

we want to be very careful on our selection

this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like

so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it

has a death education background so that anybody could handle yeah

it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it

Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow

no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing

it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do

biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do

it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today

what she calls

can be found at War stores in the room. Com thanks to Danielle forshee

Yahoo website and thank you for listening if you like this episode

you’re sweeter podcast

Hi welcome to the show. Can you tell us your name and where you’re from?

D: Yup, my name is Danielle and I am from Kalamazoo Michigan

P: Nice, and Danielle, how many kids do you have?

D: I have two kids, book boys ages, 6 and 3.

P: so young….before you got pregnant what did you think pregnancy would be like?

D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.

So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.

P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?

D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.

P: Yeah, was it easy to get pregnant that first time?

D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.

P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?

D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year.  We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.

P: Yeah, the testing is not…not as fun as you might think it would be.

D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive

P: totally

D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on.  My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out.  They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.

P: So it sounds like they figured out what the cause was.

D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.

P: Oh wow

     it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen.  You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.

D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.

P: Yeah, yeah that’s a little scary.

D: Yeah

P: How did he take that? Was he ok or it was upsetting or…

D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him

P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic

D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him

P: Yeah, that’s super hard…although, spoiler alert, it does work out

D: Yeah, it does

P: okay so so how did you guys get pregnant?

D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF

P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta.  Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.

D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.

P: what’s what’s FET?

D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier

P: yeah

D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy.  Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.

P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless

D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….

P: Yeah

D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?

P: Yeah,

D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice

P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?

D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.

P: No kidding!

D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks

P: wait, what does that mean? That means right when he was born he had pneumonia?

D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience

     P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the  neonatal Intensive Care Unit, the NICU

D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult

P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…

D: Yeah…

P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?

D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say

P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…

D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..

P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?

D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out

P: So what’s the other issue altogether?

D: He was born deaf.

P: oh wow

D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children

You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness. 

But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics

D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children

P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.

D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.

P: Wow. That is a lot of a lot to take in and the beginning.  Did you guys sign with him before the implants or like how did you communicate?

D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.

P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.

Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.

P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.

Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process.  It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.

P: Yeah…

Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.

P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?

D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.

P: the cilia are the little hairs?

D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.

P: Yeah

D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.

P: So let’s talk about cochlear implants…

Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear.  The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.

P: Wow, that’s amazing.

Dr. Hu: It’s pretty cool technology.

P: It’s super cool is there, a surgery to affix the outside portion? How does that work? 

Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.

D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.

P: That’s amazing.  What was it like when they turned the sound on?

D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.

P: Yeah

D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.

But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing

P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.

D: Yep. Yep.

P: And it doesn’t have any effect on balance or anything like that.

D: Nope. So they say that some kids can develop like headaches and stuff down the road.  And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.

Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go.  But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.

P: Yeah

D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.

P: In your time being an audiologist I bet you’ve seen like changes in technology.

Dr. Hu: Absolutely. Oh my gosh.

P: Can you tell us a little bit about that.

Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found.  We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.

P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.

D: Absolutely

P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s

Exactly how you’d want it to work out.

D: yup, absolutely

P: So one of the kids into.

D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy.  I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,

P: that sounds fun.

D: Yeah.

P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.

D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future.  But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.

P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.

D: Yeah.

P: Why don’t you tell us about that.

D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene.  They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..

P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those

D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,

P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.

D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.

P: Yeah.  It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.

D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.

So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,

P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,

D: my husband and I? yeah. So we decided on doing this when our youngest was one.  It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will.  And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.

P: Yeah.

D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing.  And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process.  And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it.  And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.

P: That’s amazing.

D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.

P: Oh wow

D: and the husband’s a pastor. So, if anybody could handle

P: yeah

D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.

P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.

D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.

P: That is amazing. How old are the girls?

D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,

P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…

D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.

P: That’s amazing. Have you met them in person?

D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.

P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing

D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with

P: Wow,

D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.

P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.

D: Yeah,

P: and embryo adoption is less it’s less expensive than IVF?

D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.

P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story

D: I really thank you for having me and letting me share it.

P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.

     Transcribed by https://otter.ai

this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection

score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%

specific genetic mutation has caused deafness in Danielson

jb2

which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning

because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old

Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery

pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work

thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral

what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to

elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there

and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest

you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information

does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or

do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims

what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing

is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants

he’s gearing probably imagined won’t change like other people as you age

it’ll have any effect on balance or anything like that

and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first

you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing

audiologist I bet you’ve seen like changes in technology absolutely

the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds

definitely improved. So many people in my eye

whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to

is really lucky when you have an issue to have a comment on right

figure it out

Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF

yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you

these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption

adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility

emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say

we want to be very careful on our selection

this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like

so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it

has a death education background so that anybody could handle yeah

it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it

Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow

no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing

it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do

biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do

it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today

what she calls

can be found at War stores in the room. Com thanks to Danielle forshee

Yahoo website and thank you for listening if you like this episode

you’re sweeter podcast

Hi welcome to the show. Can you tell us your name and where you’re from?

D: Yup, my name is Danielle and I am from Kalamazoo Michigan

P: Nice, and Danielle, how many kids do you have?

D: I have two kids, book boys ages, 6 and 3.

P: so young….before you got pregnant what did you think pregnancy would be like?

D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.

So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.

P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?

D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.

P: Yeah, was it easy to get pregnant that first time?

D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.

P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?

D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year.  We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.

P: Yeah, the testing is not…not as fun as you might think it would be.

D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive

P: totally

D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on.  My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out.  They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.

P: So it sounds like they figured out what the cause was.

D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.

P: Oh wow

     it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen.  You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.

D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.

P: Yeah, yeah that’s a little scary.

D: Yeah

P: How did he take that? Was he ok or it was upsetting or…

D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him

P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic

D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him

P: Yeah, that’s super hard…although, spoiler alert, it does work out

D: Yeah, it does

P: okay so so how did you guys get pregnant?

D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF

P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta.  Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.

D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.

P: what’s what’s FET?

D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier

P: yeah

D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy.  Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.

P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless

D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….

P: Yeah

D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?

P: Yeah,

D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice

P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?

D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.

P: No kidding!

D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks

P: wait, what does that mean? That means right when he was born he had pneumonia?

D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience

     P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the  neonatal Intensive Care Unit, the NICU

D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult

P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…

D: Yeah…

P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?

D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say

P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…

D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..

P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?

D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out

P: So what’s the other issue altogether?

D: He was born deaf.

P: oh wow

D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children

You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness. 

But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics

D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children

P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.

D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.

P: Wow. That is a lot of a lot to take in and the beginning.  Did you guys sign with him before the implants or like how did you communicate?

D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.

P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.

Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.

P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.

Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process.  It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.

P: Yeah…

Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.

P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?

D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.

P: the cilia are the little hairs?

D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.

P: Yeah

D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.

P: So let’s talk about cochlear implants…

Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear.  The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.

P: Wow, that’s amazing.

Dr. Hu: It’s pretty cool technology.

P: It’s super cool is there, a surgery to affix the outside portion? How does that work? 

Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.

D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.

P: That’s amazing.  What was it like when they turned the sound on?

D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.

P: Yeah

D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.

But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing

P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.

D: Yep. Yep.

P: And it doesn’t have any effect on balance or anything like that.

D: Nope. So they say that some kids can develop like headaches and stuff down the road.  And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.

Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go.  But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.

P: Yeah

D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.

P: In your time being an audiologist I bet you’ve seen like changes in technology.

Dr. Hu: Absolutely. Oh my gosh.

P: Can you tell us a little bit about that.

Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found.  We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.

P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.

D: Absolutely

P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s

Exactly how you’d want it to work out.

D: yup, absolutely

P: So one of the kids into.

D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy.  I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,

P: that sounds fun.

D: Yeah.

P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.

D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future.  But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.

P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.

D: Yeah.

P: Why don’t you tell us about that.

D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene.  They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..

P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those

D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,

P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.

D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.

P: Yeah.  It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.

D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.

So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,

P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,

D: my husband and I? yeah. So we decided on doing this when our youngest was one.  It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will.  And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.

P: Yeah.

D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing.  And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process.  And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it.  And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.

P: That’s amazing.

D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.

P: Oh wow

D: and the husband’s a pastor. So, if anybody could handle

P: yeah

D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.

P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.

D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.

P: That is amazing. How old are the girls?

D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,

P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…

D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.

P: That’s amazing. Have you met them in person?

D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.

P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing

D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with

P: Wow,

D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.

P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.

D: Yeah,

P: and embryo adoption is less it’s less expensive than IVF?

D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.

P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story

D: I really thank you for having me and letting me share it.

P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.

     Transcribed by https://otter.ai

this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection

score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%

specific genetic mutation has caused deafness in Danielson

jb2

which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning

because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old

Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery

pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work

thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral

what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to

elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there

and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest

you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information

does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or

do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims

what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing

is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants

he’s gearing probably imagined won’t change like other people as you age

it’ll have any effect on balance or anything like that

and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first

you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing

audiologist I bet you’ve seen like changes in technology absolutely

the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds

definitely improved. So many people in my eye

whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to

is really lucky when you have an issue to have a comment on right

figure it out

Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF

yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you

these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption

adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility

emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say

we want to be very careful on our selection

this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like

so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it

has a death education background so that anybody could handle yeah

it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it

Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow

no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing

it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do

biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do

it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today

what she calls

can be found at War stores in the room. Com thanks to Danielle forshee

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