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.



 

Episode 77SN: Ambivalence About Stepping into Pregnancy: Courtney’s Story, Part I

Today’s guest shares her experience of pregnancy, birth and motherhood, none of which conformed to her expectation. She walked into pregnancy ambivalently ….and to her surprise loved many of the aspects of the experience that people often find difficult; because of a lifelong struggle with insomnia, the nine month hormone bath of pregnancy gave her luxurious periods of long sought-after sleep; she approached the pain of delivery as a unique experience between herself and her future daughter, and those early sleepless months with a newborn, which so many find challenging, turned out to be a period she’d been trained by her insomnia to manage better than most. I’ve spoken to hundreds of women about their experiences, and I’ve never heard this perspective….what follows is the first part of our conversation.

Find Courtney’s Book, The Year of the Horses, here

Find Courtney’s other writing, here

Audio Transcript

Paulette kamenecka : Hi, thanks so much for coming on the show today we are lucky to have Courtney Maum who has written a number of books, the most recent of which is a memoir called The Year of the Horses, which is a beautifully written book that I totally enjoyed. And if I had to summarize it in one sentence, I’d say it’s the story of your reconnection with horses, a childhood passion that leads you back to a deeper understanding of yourself in the midst of some significant midlife challenges.

Courtney: absolutely nailed it.

 

P: Which I feel like doesn’t isn’t loving enough. about horses but I am going to be honest right from the beginning and say that I’m kind of afraid of horses so while your book challenge that view, and I

 

C: I’m glad you brought that up because this is a book I really think it’s more for non horse people than horse I mean a horse people will. Inevitably I think feel connected to it, but I really I wanted to write this for the type of person who, you know, love to swim as a young person or dance or make up songs on the piano or wear funny hats and for whatever reason, you know, being an adult and a responsible person who has to you know, pay the rent or whatever it is, they’ve lost access to that part of joy and fantasy that was in their youth. So it was horses for me, but it you know, could have been something else.

 

P: Usually when I talk to people, I think childhood can shape your view of family what family is what you expect it to look like, if you want a family if you grew up with a sibling. I know from your book that you grew up with a brother. And I’m wondering if you can tell us how did you growing up with a brother are other aspects of your young life impact your ideas about kids having kids?

 

C: Let’s see I Oh, that’s a really interesting question. My brother Brendan is five years younger than I am so I spent the first five years of my life you know, it was like a fairy tale Princess childhood. My dad at that time was a big wig on Wall Street. This was the 1980s in Connecticut. You know, stay at home mom who had cocktail parties every night. You know, it was a it was a scene it was it was a very fortunate childhood. And then my brother was born and my dad hadn’t actually wanted a second child. I didn’t know that, you know, I mean, I something was wrong because they were fighting all the time, but I didn’t know that until later. And as it turned out, my brother had a lot of learning developmental issues that made parenting him different than parenting me. You know, he had to have special schooling and lots of medical treatment. And things like that. 

 

So I will say that as a young person, I staunchly did not want kids. And I think it probably has to do with the fact that when the dynamic of our family was changed, for many reasons, it drove my parents apart. I love my brother. You know, our relationship is a complicated one, because everything that I value about myself and I think the way in which I communicate with people, fundamentally is through writing. Even when I speak to people I see the world as a writer. And my brother can…he can barely read. You know, so our love language really comes down to just spending time in each other’s physical space, which doesn’t get to happen very often. He lives in Florida, and you know, we’re at our best when we’re fishing off a dock together and eating pizza such simple simple things, but you know, that means that I am thus burying a lot of parts of myself that are vital, like my reading and writing life and that you know, he’s too he’s quite religious. I’m not you know, I think it’s a it’s a work in progress. But definitely, if for nothing else, just the cost and effort that I saw in parenting the way it was modeled for me because my brother was so sick. He spent a great wafts of time I’m talking months and months in the Yale New Haven Children’s Hospital and watching my mom, first of all, not be able to be there for me, you know, physically and the cost of the hotel room and at that point, they were already divorced and money. Things had changed. You know, financial pressure was back on just I thought, Oh, my God, I already knew I wanted to be a writer. And so it seemed to me that the way forward was to support myself and get to a place where I could support myself financially and just not have kids and then there’s no one competing with myself for my time. You know, and, and to be honest, I hadn’t really wavered from that mindset what happened and I married a man who felt pretty similar. You know, he’s a filmmaker and was really keen to just have our schedule, be our own and travel the world and whatnot, and it wasn’t until I was around 33 years old. That he changed his mind and decided he actually did want to try out and I really didn’t I really didn’t we it was two years of have come to Jesus you know, disagreements it I mean, I’m, I love my daughter had the perfect daughter for me. And she’s amazing, but it could very easily it could have could have gone a different way because I still I didn’t have that change apart. He did.

 

P: So that’s particularly interesting because you know, you’re the one with all the hard labor of pregnancy and all that stuff. So I’m hoping that it was easy to get pregnant.

 

C: Oh, well, it was so easy that I didn’t even know I was pregnant. I was practicing abstinence because I actively did not want a child. And we you know, hopefully this isn’t too much TMI, that’s what we’re here for. But it was a Christmas Eve conception where my husband and I we’ve long since stopped traveling to relatives for the winter holidays. It’s sort of nice and calm to just do it with friends or be be alone and I love champagne, and I love good champagne and I think I you know mostly drank the entire bottle and I didn’t we both forgot that you know, we had sex basically. And it wasn’t until two months later, I was just a wreck. I thought I had Lyme disease. I didn’t I thought I had mono. And I had forgotten to you know, and I went to the doctor, I didn’t even have health insurance so I had to pay out of pocket. This trashy clinic. And the female doctor told me that I had she highly suspected I had diabetes. I went through all these expensive tests. 

 

P: Wow. 

 

C: Yeah, it was a lot of nonsense. So by the time I mean it was so silly. I thought I finally got it because $7 CVS kit and I was I was more than two months along. When I thought I had Lyme disease, you know

 

P: wow, what were you what were your symptoms really throwing up or you just didn’t feel wasn’t throwing up? 

 

C: But I felt carsick all the time. I mean, I now know that it was nausea. And I mean, it just sounds ludicrous. You know, I’m a well educated person. This sounds so dumb, but I things were tasting different. My husband, he’s French, so we often have wine at dinner, and I kept telling him like, you, where are you getting this wine? It’s off, you know, and he’s like, No, yeah, so it’s just tastes weird. I don’t want it. And then I remember, I like baking soda, toothpaste. That’s my brand of choice. And that I was like, Oh, they changed their logo, which is something I noticed because I work in Marketing. And I said and they must have changed their formula and I wrote a no like, I so type A I wrote a note to their customer service something saying like, you know your taste is I mean, just Hello. And ultimately what happened was, we often celebrate Christmas Eve with a with friends who were Jewish, and they messed up and they thought it was Christmas Day. And my my girlfriend reminded me after the fact she’s like, you told me on Christmas Eve like Oh, it’s good that you got the dates wrong because we’re gonna have sexy time we like got a bottle of champagne. All of a sudden that came back to me. We did consummate the relationship that night and I made a kid so it was a one time one time was stop and shop.

 

P: That sounds pretty easy to be fair to you. It is all of those symptoms are if you’re not anticipating them and looking for wacky and you know, all hail pregnancy chemistry that’s keeping you from wine without you knowing it. Right, like 

 

C: totally and we at that point, we lived in the southern Berkshires, which is just an area laden with ticks. So many of my friends have struggled horribly from Lyme disease. So it wasn’t that nonsensical that I thought that that’s what I was struggling with. And you know, again, not having health insurance at that time. I was always really slow to go to a doctor something was up so you know, but it was a it was a baby.

 

P: And how was the pregnancy?

 

C: Oh my gosh. I loved it. I mean, funnily enough, was some of the most healthy and delightful moments of my life because I’ve struggled with chronic insomnia from a very, very young age had horrible sleeping problems, which really affects my mental health. And oh my gosh, should I say I was able to nap for the first time since being you know, in the single digits of life. I napped, I felt benevolent all the time. It was glorious. To be honest. I had a really nice pregnancy.

 

P: Well, that’s an amazing gift for someone who walks into it. ambivalently 

 

C: Yeah, 

 

P: and actually, why don’t you tell us about the birth first and then I want to read one quote from your book about your experience with pregnancy and motherhood going into the birth What were you anticipating what were you hoping for?

 

C: I did enlist a doula. I didn’t necessarily have strong you know, I did not like I wanted to do a home birth but I did try to I wanted to go without medication. Because I’m someone whether it’s recreational drugs or medication, I tend to have the reverse effect you know, of whatever’s supposed to happen. And I wanted to just handle whatever pain and sensations were coming my way. First of all, I wanted to be present. But also I thought I just handled it better without anything and I did a lot of prepping for the birth thinking about pain management. And when I was 16 maybe about to turn 16 I had a horrible accident where I was biking and I was hit and run over and dragged by a car. 

 

P: Oh my god. 

 

C: And I often would think about, I bet it can’t hurt more than that. You know, and I would think I think that I’ve already dealt with a level of physical pain that probably, I hope can’t be revisited. And so I just thought mostly about pain management, which was great because I was super calm through the contractractions. So calm that the nurses said it was a problem because I was resting through my contractions. But then, but then when it came to the pushing, I hadn’t given any thought to the pushing. I didn’t go to any classes. No one people don’t talk that much about pushing. They may sound like oh, it’s like a bowel movement when it needs to come out. It comes out and it didn’t. That was not how it was for me. My baby was in a normal position and everything that I could not. I couldn’t get her out. I had been laboring for a long time and I was really exhausted, but I also just had given no, it was like I’d been asked to all sudden do an advanced ballet move that I’d done no training. I was astonished how ill prepared I was for the pushing. Ultimately, I ended up having to have an episiotomy, which I didn’t know a doctor had ever even told me. 

 

P: Oh, 

 

C: and I didn’t know until two days later I tried to get up and go to the bathroom by myself and I almost fainted and a nurse came in and said you know you’ve had an a Pz on me and I said no one no one told me that. So, you know, other than the kind of the final moments. I loved the birth as well. I mean, I It wasn’t possible because of my age but I had you know I was thinking about surrogacy I just I really enjoyed being pregnant. I thought I the birth thing. I have so much affection for that experience because it was so visceral. I’m someone who’s always in my mind and I overthink things. And my mind is always in 100 different places and the brute physicality of birth. You couldn’t there was nothing to focus on. But the task at hand. And I loved that I found that peaceful. You know, I mean, I was fortunate that I was I made it to the doctors right I had that point I did health health insurance and, you know, wasn’t worried about what it would cost because I have health insurance. So I was fortunate enough to be able to focus on the good things, but I just loved the sheer presence that that was required by my mind and my body in order to do this thing and I also thought like, how amazing that my body can create these feelings that have not been hit by a car that this is feeling the way it does. Because of what’s inside my body that I’ve created myself. I thought that was like wild.

 

P: That is pretty amazing. And then it sounds like you didn’t do an epidural

is what that sounds like 

 

C: they did. They did a spinal tap right before the piece what they they came in and they said you’ve been laboring for too long and honestly everyone needs to was changing shifts. And the doctor who’s coming on now he’s gonna give you a C section is what they said. So they were like, You got two choices. Either we go straight to C section, or you do spinal tap and we give it like a half hour or more. And so I thought okay, that’s not so they did the spinal tap and then without telling me they did the episiotomy and then off we were off then I had a baby. 

 

P: Wow. Well that’s a that’s an interesting and obviously not predicted route for that but amazing that you’re appreciating that physical experience and that you can use your past experience to call me with a present because I think most people go into it with a fair amount of panic about the pain they may suffer and pain is one of those things that you I think you don’t you can’t have a visceral memory of it anymore. Like it is kind of exists only in a moment and although you remember the bike thing as being really painful, probably you can’t recall, like the pain you can’t recall

 

C: I can unfortunately, I actually have pretty good recall of pain and I remember the physical sensations of birth very well. I find it really interesting. I can really call them up I mean, you know part of it is that I wrote I write about these things. You know they are they are somewhere but no I can access them. I feel like I cannot access them and I have a friend who she just gave birth but we were talking this summer and she was so worried about pain. really freaked out about it. And you know she’s she’s an incredibly accomplished writer herself. She’s also a polo player. And I said you know what it feels like when a horse scallops away with you and you then you’re not in your mind anymore. You just have to deal with the sensation at hand. And it’s also kind of thrilling, it’s thrilling and scary. And there’s nothing else to think about and you should start building up almost some excitement and respect for the sensations that are come coming your way because they’re going to be completely yours for the rest of your life. And you’re going to be overwhelming in a way that it’s it’s it’s just you and this thing you know you’re gonna have to overcome this and and even if you have a great support system, you know, but it’s this is a once in a lifetime thing even if you have multiple pregnancies. I think that each each is different and it’s it is special and something that only us women for better or for worse can experience it’s it’s a not everyone wants to and not everyone should you know but if if, for whatever reason you are going to give birth, you know, you might as well practice some form of gratitude, just recognize what’s happening. You know,

 

P: that’s super interesting, and I usually think it’s very hard to prepare someone else for birth because you can’t find the words that will help them feel what’s coming in can’t translate that experience in a way that that will make someone else understand it and it is entirely experiential.

 

C: You know, I mean, I you know, I can talk about how it was for me, but that doesn’t mean that it will be that way. For other people. But I mean, to me, I just, I always told people I was at sea during this horrible storm, and I could see each wave coming at me almost like the movie The Perfect Storm when the waves you know, 100 stories high. And I knew that when the wave hit that it would hurt but that there was 15 seconds between each wave where there was some fear, but I knew I would get through the wave because I’d gotten through it before and then you just get into this rhythm on the ship. That’s how I felt it and that’s how I you know if people wanted to know I didn’t go willy nilly telling people this, but that’s, you know, I just kept reminding myself that after each crest, there’s there’s a moment of peace. Right.

 

P: So the other thing that’s interesting about that is I think you have this analogous experience with horses where when I was getting the contractions it was for me a really scary sensation of my you know, having no control over the body. I’m in like, I’m in this thing, but I can’t, I can’t turn it off. There’s only one way forward. But it sounds like with your with your horse experience. You have kind of felt that in a different context and maybe not necessarily pain, but the sense that you don’t have control about what’s going to happen to your body in the next three minutes because the horse is that we’re just controlling that. 

 

C: Right? I mean, we like to pretend that we have control but we lose control. Every horse person is going to lose control even on the ground. You know, I have a horse right now who’s so dangerous on the ground. You know, if I’m going to be injured, probably it’s going to be on the ground while I’m just walking her somewhere and something scares her and she rears or kicks, you know. So when you’re those horrible, horrible moment when you know you’re about to have a car crash, that’s not really a lack of control you want to celebrate, right? 

 

P: right, for sure

 

C: No, I would never say that. But I remember when my contractions first started coming. I thought, Okay, well, you very well might never live these sensations again, and we can’t go backwards. So, you know, let’s stay present and just think through this as like an artistic experiment. And I remember very well, when my contractions hit, we had a little log cabin and my husband had a film studio, a place where he worked out of in the back it was not at all connected to the house and I didn’t have my phone. I had been sitting with him that day because I was feeling a little weird. And I was listless and I had no idea what to do with my energy. And I left and I gone to the house, and I weirdly started I’ll never forget this. He started watching this French movie, based off of real facts about a group of like 17 teenagers that all get pregnant at the same time. I was watching this movie, this beautiful pregnant female bodies. And all of a sudden I was like, that is hard to describe this weird, something’s happening. I drew a bath and then I had all these contractions in the bath but the problem was I left my phone in a place with my husband and I at that point, I couldn’t get out of the bath but I also didn’t know how long it would take. You know, he disappeared into work. I was there forever. I pulled towels down and blankets and I think it was an hour and a half he finally came in and I was like oh my god. Call the doula but I remember even in the bath I just thought this is amazing. I’m in a dream of my own making like those sensations you have when you’re dreaming or having a nightmare and you know that sometimes you wake yourself up because you’re about to fall, but I I was awake and I had that falling sensation into my own body. 

 

P: Yeah. 

 

C: And I really did think like, this is incredible. It’s not like, you know, necessarily like I don’t love nausea, you know, but it was like an irrevocable sensation. And I just, I learned that I was like my daughter and myself creating this experience. It was very exciting. I think

 

P: this is an amazing way to talk about it and and I’m sure you will be surprised like not the view that a lot of people share but it is it’s moving right it is if only I could have other kids that would walk into it that way. 

 

So I’m going to read a little section of your book here to kick us off with the next question you write you write the people most shocked by the fact that I had a baby or in order my mother then myself. But I loved it. Love the everything on early motherhood, my changing body the shifting of priorities even though once in a lifetime ravages of birth. I was at my healthiest and most productive as a pregnant woman. I felt beautiful and vital. After  his birth those positive feelings didn’t go away. I was anchored I felt necessary as a food source. I was all I could think of during my last year was that I wanted all that back to Easy sleep, the focus mind the permanent anchor. 

 

So what’s interesting to me about this is that you So reluctantly are drawn into this, but it is wonderful in ways you couldn’t anticipate and it sounds like you really like that newborn period, which most of us find, so challenging, and taxing and for someone who didn’t want necessarily a draw on her time. I mean, you have no time and that period, right?

 

C: Well, a couple of things like my child when she was a baby and of course everyone counseled us against this, but very early on, she started this routine where she would breastfeed for an hour at a time. But then she would sleep for five hours. Oh wow. Right. So instead of every 20 minutes, every whatever it is, that’s what we ran with for quite a long time and I am not joking. I understand five hours sometimes for but long periods of time where she was just napping and then and the breastfeeding sessions were I mean, I write about them in the book. They were never deeply and I looked forward to them because they were so long. And I had a comfy chair and a book and I’d read by you know it was just beautiful. Now of course, I didn’t get to do that for long because it my body didn’t get the signal to produce a lot of milk. Your body produces more breast milk when it’s there’s frequent smaller feeds so inevitably, she wasn’t getting enough weight because I wasn’t producing enough milk and we had to go to a formula. But in the first couple of months, I think I held out for three months it was really, it was really blissful. But ultimately I mean, I was well prepared for that period of motherhood because of my chronic insomnia. So functioning pretty well. on very little sleep was sort of a baseline thing, kind of where I was already coming from, and whatever hormones were going through my body unlike all the times before where I thought, oh my god, how am I going to face my day on three or four hours of sleep? How am I going to do this like whatever? book tour give a talk host dinner party without cracking in half I was buttressed by just oxytocin. You know, I didn’t feel stressed out about it also didn’t know it’s very lucky I was self employed. It’s important to point out that I wasn’t stressed right like I could, if I felt really sleepy, well then maybe my writing that day or whatever it was I was doing the emails were going to be a little wacky, but it’s not like I was going to lose a client at an office so the stakes were lower and then just for Virgo type A type person like me, ticking off boxes, just identifying what my child or infants needs. Were they were so easy to meet again, if she was healthy, right. I’m not talking about being an ICU or something. But it is just this checklist. Is she hot? Is she cold? She’s hungry. Is she tired? Is there a tag that’s scratching at her neck? Did we forget her favorite blanket? And honestly, I think there weren’t even there were less than 10 things and normally if you check those boxes, and we’re always prepared. I like people people who know me well can tell you on like a masterful picnic prep you know, I’m the one who always at a moment’s notice. You want to pick them I’ve had little salt packets in my purse. I have like a Swiss Army and I’m just always ready for anything. And and so that’s how I operated you know whether in the house or driving around, just had everything on hand all the time. I was very prepared. And thus I felt very successful and very happy about the ways in which I was meeting your needs and then you know, for me the the dark stuff came and I started to really unravel and feel that I was failing as a mother when she turned two and instead of, oh, she’s crying because she’s hungry. She’s crying because she wants attention. She’s crying because she wants to be played with and I’m like, Oh, that’s not something I can put in a car or in a bag or order. You know, that has to come from me. And a place of play. And time and attention and and then everything came apart. i That’s That’s for me. Like where the real mothering came in and it’s beyond survival. It’s about emotional nourishment, and I succeeded less, let’s say

 

P: Well it’s interesting that early motherhood so clearly suited a lot of your native skills, and it’s like a kind of an experience. You wouldn’t have known that those two matchups so well, and once they become real people at about two become significantly harder, right that’s I think that is true across the board. And that is kind of a spot where your own experience as a child, I think plays in really strongly in many ways that we’re totally blind to, like we

 

C: Yeah, I think that’s true. And I think I think that some people that’s when they start to shine as parents you know that for instance, my husband really suffered with type stuff because he’s the type of person he’ll go to the grocery list and forget the list. Yeah, you know, he’s, he’s not terribly forgetful, but he’s not he’ll drive somewhere and not realize that we’re driving through lunch and not think to pack sandwiches, you know, whatever the heck it is. And that stuff matters a lot. That level of organization matters a lot when you have an infant, but it matters less. That’s yeah, that’s when he really rose rose to the challenge was dropping everything to play or come up with a funny game, or throw a ball who makes the sounds and I just, I could do that for like five or 10 minutes, but then I had my own stuff I wanted to move on to I just didn’t have that. I guess I could put this in the present. I still don’t really have that emotional generosity, you know and that I could have guessed but the other stuff that I would love early stuff so much. Yeah, I didn’t see that.

 

P: And when you’re you say your mother was surprised is that because she thought you would focus solely on career?

 

C: Because I made it clear to her from a transit of teenager. My mom loves kids. She loves being a caretaker and I’d always said Don’t Don’t count on me, you know, and then she was just it was always there because my brother you know had been counseled not to have kids and just his was taking medication that a certain point I you know, rendered him incapable of having kids. And so my mom’s just really identified as someone who wasn’t going to have grandchildren and she was deeply upset about that. And it had gotten to a point where she called our cat giant man who had you know, to be like, how’s my grandson and had really come around. So just accepting that she probably wasn’t going to have grandchildren’s. So she was, I mean, beyond like, I can’t it was incredibly moving to see how excited and invested she was. And it was a really beautiful time in our relationship to because I don’t think I’ve ever needed my mom like that. You know, and all of her characteristics that sometimes makes me frustrated with her which is selflessness, her ability to self efface space and time and you know that time in my life when when I really needed someone to drop everything and be there for me and she she was wonderful that way.

 

P: Yeah, a lot is forgiven for good grandparenting 

 

C: Yes,  Absolutely. That’s well said,

 

P: I wanted to read this quote because I as I loved it, it sounds like you went to your first pregnancy appointment in France and I want to roll out my very dusty French accent. So I hope  you’re sitting October. I said, I’m interested in natural childbirth, you know, laboring without any medicine. Do you have any thoughts on that really low, closed her ledger my checks for appointments functioning as a bookmark that she said is a question for a therapist, not a gynecologist. I love that because no gynecologist here would say that.

  

C: Absolutely not. No. Oh my god. She’s. I wrote an essay about her recently. If you Google my name and letter to a stranger, this is a wonderful special thing and a literary magazine, where people write letters to strangers. She’s not really a stranger, but this was a long time ago. And I wrote a whole essay about my obsession with my French gynecologist, and she was hardcore. She’s very hardcore. And you know, that section goes on where I ask questions about breastfeeding and she says if you want to ruin your breasts, you know Knock yourself out and just Oh, and then drinking. She said, Only drink two drinks a day. Just completely flew in the face of everything that we tend to say in America.

P:

I’m going to stop my conversation with Courtney right here….where we can all take a minute to think about Marie Laure’s, what I would call, woman centric approach to pregnancy, birth and breastfeeding…..thanks again to courtney for sharing her experience. I particularly appreciate her willingness to discuss the challenging issues around this transformative event so openly. It’s the kind of conversation that should be part of our larger public conversation–there are few other decisions we make in life…I’m at a loss to think of any other–that change your life so completely like pregnancy and birth–walking into a decision that casts such a large shadow with some ambivalence makes sense, not that everyone harbors uncertainties but it makes sense to me that people have them,  and despite that, most public discussions about this topic are cast in much starker terms and really the only culturally acceptable response is unvarnished happiness. I also appreciate Courtney’s expansive appreciation of birth, both because it recognizes that the experience involves pain, but it celebrates the fact that each birth is unique and its a connection, or an experience or a memory that you’ll have with the newborn forever…and that seems like a true and useful way to approach it….Courtney and I talk about what led her to her second pregnancy, and about that pull of our imagination toward lives unlived, and…just a bit, about horses.
 
Thanks for listening.
 
We’ll be back next Friday with the rest of my conversation with Courtney Maum.

Episode 73SN: A Birth Visited by Too Many Medical Interventions: Nicole’s story, Part I

Today’s guest walked into pregnancy with an expectation that the process would be as smooth for her as it had been for her mother, as it was for the farm animals she’d been surrounded by for her whole life, as it was from 50,000 feet: civilization depends on this process and women’s bodies were made for this project. Although the pregnancy part was relatively straightforward, the ways in which her first birth unfolded deviated profoundly from her expectation. In this first part of our conversation we’ll hear how she processed that first experience, and how she used what she learned in this experience to alter the births that followed.

Relationship between Pain Medication & Fever

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7976662/

https://www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/in-depth/labor-and-delivery/art-20049326

https://www.karger.com/Article/FullText/504805

Audio Transcript

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

Today’s guest walked into pregnancy with an expectation that the process would be as smooth for her as it had been for her mother, as it was for the farm animals she’d been surrounded by for her whole life, as it was from 50,000 feet: civilization depends on this process and women’s bodies were made for this project. Although the pregnancy part was relatively straightforward, the ways in which her first birth unfolded deviated profoundly from her expectation. In this first part of our conversation we’ll hear how she processed that first experience, and how she used what she learned in this experience to alter the births that followed.

Let’s get to her inspiring story

 

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

 

Nicole: Sure. My name is Nicole. I hail from the Midwest, Indiana. I’m halfway between Chicago and Indianapolis. 

 

P: Okay, so let’s talk pregnancy. You have three kids? 

 

N: Three. Yep, that’s right. 

 

P: And what’s the one of the ages?

 

N: three alive? I’ve three alive. Yep. So my kids are 420 

 

P: Wow, nice. That’s well spaced. Well done. 

 

N: I couldn’t have done it better if I planned it. 

 

P: Yeah. Yeah, totally. I agree. So before you got pregnant, what did you think pregnancy would be like? What were you imagining?

 

N: Uh, well, uh, so it all kind of happened kind of fast for me. My husband and I have been married now I think for seven years but we have been together for about 20 years.

And yeah, you know, when we were kids, we knew we knew we were gonna have kids, when we were kids, and that was something we always talked about when we grow up when we get married when we have kids. So we always had this, like far off distant idea. of in the future we will have children, but being unmarried teenagers, you know, we’re like avoiding that like the plague. 

 

P: yeah

 

N: We don’t want to be pregnant. We don’t you know, we don’t want that. You all have that. So we got married, and month and a half later, we were pregnant. It wasn’t quite the honeymoon baby. But we didn’t plan that we weren’t trying it wasn’t intended was not intended, but we were very surprised by it. And so my experience with it was going practically my whole life avoiding pregnancy. 

 

P: Yeah, 

 

N: to now being pregnant and it being socially acceptable, where like, so I didn’t have that time for my mind to shift from avoiding it to desiring it. So that was what what really struck me about my first pregnancy easy Yeah, that emotional trip into dealing with what what was happening? 

P: Well, good to good you know, struggle with the front end. Did you find out with like a home kid or how did you how did you find out you’re pregnant? 

 

N: I had an inkling who and I took a test and it was positive. And I, at that time, didn’t think you know, anything could happen. If the home pregnancy test says it’s positive than it’s positive and we just went with it. You know, we, you know, immediately called the doctor because that’s what you do when you’re pregnant, right? You go to the doctor, so we call the doctor we make the appointment we waited the traditional three months to tell everybody you know, in case something bad happened. We did all of those things like the way the cultural norm is so we went we went through all of that and that was all I mean, it’s still like deer in the headlights. You know, I just went from avoiding this to now everybody’s excited about it. 

 

P: That’s kind of amazing. I wonder where the three month rule. I feel like my doctor told me that although I did not follow it at all and had a miscarriage and just had to tell everyone but I think it’s I think it’s from I think my doctor said you might want to wait, but I can’t remember where it comes from. Anyway, 

 

N: I think that’s an old rule when I don’t know when doctors first started playing a big important role in pregnancy and they just advised you know, you want to save face. If you do have a miscarriage. You don’t want to have to go around telling everybody your business that you had a miscarriage and, you know, we thought we thought that that must be important. So that’s what we did. 

 

P: Yeah, yeah. So it was the first trimester easy. 

 

N: The whole pregnancy was pretty easy. Really. I didn’t have a lot of morning sickness. I craved pickles. I was working in a factory at the time. I was on my feet a lot time and that was the big joke like crazy pregnant lady drinking pickle juice. And I did I am but I had heartburn in my third trimester and that was really the hardest thing. You know, everybody has the discomfort and the tiredness and that part of it. But looking back on it, it was pretty easy. I know though that there were days when I was like, Oh my gosh, I can’t do this anymore. Like in the moment you deal with that, but But when it’s not extreme, and there’s not medical conditions and things like that, you just say Oh, this must be what everybody does. This is 

 

P: we just sort of accept it because it’s because how else is it gonna go right? That’s what you’re told. Yeah. So take us to the day of the birth. How do we know today’s today? And then let’s walk slowly through that day. 

 

N: Yeah, sure. So. So looking back on everything that happened where my expectations didn’t really match up to what was happening was like with the birth part of it, and, and that was where, like, the experience just hit me like a Mack truck. So I grew up on a farm. You know, I assumed pigs and cows and horses. You know everything goats, sheep, I’ve seen everything be born. I know like, I knew when I was a kid like population how that happens. So I’ve always known this and I’ve been around forever. And when I got pregnant, my mom’s advice to me was, you know how this works. Don’t read the literature that they give you. It will scare you to death. You know how birth works. You’ve seen it done. Trust your body and it will happen. And my mom, in my mind was a warrior. She had four kids and the first three were born in a hospital completely naturally. The fourth one was a C section. You know, and there’s, you know, the story around you know, how the baby wouldn’t come down to the birth canal and that’s just how it was and whatever. But, you know, I had this wonderful example in my life of how birth was supposed to work. So I thought, okay, I don’t need to read anything. I don’t need to prepare my body knows what to do. I’ve seen it done. It’s going to happen. So I didn’t read anything, not What to Expect When You’re Expecting I didn’t watch videos. I didn’t blogs, nothing. 

 

And my husband says he knew that I was going to go into labor because I came home and I was like, our yard is a mess. I hate it. We’re going to clean it. All up like the baby is coming. I don’t want to have to come home and deal with a messy yard. We’re going to mow it and we’re going to weed it and we’re going to pull all the shrubs out of the flower bed. And you know, I just had all this energy and he said, you know, he reminds me of sitting on the couch after doing all of that work. I was just sitting there saying, I don’t know why everybody says pregnancy is so tiring. And I don’t know why the third trimester is supposed to be so bad because I just have all this energy and I feel so great. He’s like, uh huh, he knew what was coming.

 

So that night after doing all of this yard work and just feeling so amazing. I got up to go pee at midnight. And as I was sitting on the toilet, I heard like an audible pop.

 

P: Oh wow

 

N: That is a gush of water. You know like the things that doesn’t happen to everybody but that’s what it was. And it was read amniotic fluid and I like immediately just began shaking with fear like head to toe overcome with fear, like my whole body to the core was shaking. So I had to wait for this session to stop I had to go wake my husband up in the middle of the night. I have to say you know it’s time we have to no it didn’t take long once he heard me say it’s time like he was immediately awake and alert and up and out of bed and I had a bag packed and you know I am prepared that much at least we did not have a car seat. It was not in our car, but we’re like that’s the least of our worries. We’ll figure it out later. So we grab our bag and we go to the hospital and I didn’t think you know amniotic fluid was gonna leak I had no idea so I just put on jeans and you know I’m still leaking in the car. we didn’t have a trash bag. I made a mess of the car. I walked into the emergency room entrance of the hospital just like water still pouring down my legs and my husband got me a wheelchair and the people are like looking at me like what are you doing here? And I’m like, my water broke and they were like, oh, and then it became an emergency to get me checked in a wheelchair and to the labor and delivery. And so, all of this time though I’m still shaking with fear. We get to labor and delivery and we have this whole big rig mo row. Are you really in labor? Are you feeling contractions? Is this really your water breaking? And, you know, then the they had to do an amniotic test where they had to like swab me to determine that the fluid that was coming out really buzzed amniotic fluid. When it came back positive then they decided that I must really be in labor and I will be allowed to stay because they were so busy that night. 

 

P: That is like a little circus environment there. Although I think most people don’t experience the kind of dramatic and obvious water breaking that you did. So So I think some people are really unsure themselves like oh my Warbreaker broke or not although it seems like yours is pretty clear.

 

N: absolutely it was

 

P: And so at this point you’re not feeling contractions are you are 

 

N: i i probably had some pain in my back but I wasn’t feeling like miserable countable contractions I just my water had broken, but I’m also still shivering with fear. And, you know, in the birth that I’ve had since then, when looking back at that situation, I know that that fear response in my body was stopping any contractions that would have happened with that. So like this fear, this flight response that I was having definitely shut down. Anything that was happening. 

 

P: Yeah, there’s a lot of chemistry involved in that in that response. Right. So you can imagine it is telling your body like not now. 

 

N: Oh, well yeah, I mean, an animal’s in labor and there’s an ear Okay. Body says don’t be born because you’ll be taking your days and that’s, that’s what my body was going through. Because even though I like mentally knew that my body was capable of giving birth, I didn’t believe in my body like in my subconscious mind, you know, like, my body was fat and ugly. I hated it. I was constantly putting it on diets and berating it and saying, you know, I hate you all of these cultural stories that we have about women’s bodies. And and that was what was putting me into this fear like this mental juxtaposition of I know I can do this as opposed to the true like deep down beliefs that I have that my body was a piece of garbage like a piece of garbage can’t do something amazing. And and that’s that what, what, threw my first birth off the rails for sure. 

 

P: Yeah, that sounds like a really hard thing to work through in the moment. And did you have 

 

N: I was not aware of it in the moment. took several years afterwards to come to that. 

 

P: Well, you probably knew you were fearful. Right? 

 

N: Yeah, I definitely knew I was afraid and that but you know, I just thought, you know, my, I’m afraid but my body’s gonna do it. And when it happens, I’ll just go along with it. Yeah, okay. 

 

P: And so, since you’re waiting for and stopping contractions at the same time, how does that progress? 

 

N: Yeah, it doesn’t.

It doesn’t progress at all. So after it was about six hours, they have me hooked up to machines and they were measuring my contractions and I was kind of sleeping off and on but I wasn’t feeling the pain and I felt poorly, but I wasn’t feeling regular measurable contractions. So they

Come in and they hook up an idea that kind of, I think it was they started hanging Pitocin at that time. And looking back on it. I see you know, the audacity that they had to come in and talk to my husband about this. They didn’t talk to me about any of it. I didn’t give my consent. Obviously, I wasn’t going to disagree with them at that time. But it was not me giving consent.

 

P: why aren’t they talking to you? 

 

N: I was tired. I was sleepy and he was awake. So rather than, you know, trying to rouse me and have a conversation with me, they just went right to my husband and talked with him. Because like yep, if that’s what we need to do, then that’s what we need to do. And over the next six hours, they have three bags of Pitocin 

 

P; oh Wow. 

 

N: Which was causing back labor. So by noon, 12 hours after I had been admitted. To the hospital by noon, I was ready for pain medication. 

 

P: Yeah, no kidding

 

N:  They hung up a pain medication. And still they were measuring contractions and saying you know, we see you’re having contractions, you’re in labor. They were checking my dilation constantly which you know, that’s a whole another story of invasion of self being uncomfortable and just adding to those to those hormones that are slowing down labor. But so yeah, by noon then 12 hours later, I was on Pitocin and pain meds

 

P: man, this is this is hard. 

 

N: So what not what I expected when I went to the hospital, that’s for sure. 

 

P: Did you think it would be fast like what what was the image in your mind? Yeah, 

 

N: so So in my mind, I thought you know, this is gonna be quick and easy. I’m just gonna lay there and my body will take over and do what it’s supposed to do. And eventually a baby will pop out. And I will have this baby in my arms. And that’s, that’s all the thought. That’s all the space. I allowed this event to have in my mind.

 

P:  Yeah, that makes sense. I think people are fuzzy in describing birth, right? They kind of walk fast by that part. And I think it’s hard to find the right vocabulary to make you viscerally appreciate the pain 

 

N: for the first two births. For me that was true by my third birth that wasn’t so true anymore. 

 

P:Interesting. Well, I’m interested to hear how we get there. 

 

N: Yeah. 

 

P: So how do we progress like how do we 

 

N: Yeah, so noon, they start giving me pain medication and then from noon to six, my temperature starts to increase which they attributed to possible infection because my water has broke and that’s the risk of having your why you have to go to the hospital when your water breaks, is because of that risk of infection.

They don’t talk about how the pain medication that they were hanging, for me causes your body temperature to rise.

 

P: Okay, so Nicole mentions of the pain medications in labor may have caused her fever. So this turns out is not entirely straightforward. Like many things about birth. There are some studies that suggest that an epidural can be associated with a non infectious rise in temperature, but there are many other factors that can contribute to fever, including things like a long duration of labor, and a long time separating ruptured membranes from delivery. I put some links in the show notes on this topic. If you’re interested in the details.

 

N: so my temperature is rising possible infections still not feeling contractions, six o’clock comes and the on call doctor for the evening comes on to the ward and there’s lots of other women in birth the whole word of school they have women in other rooms of the hospital who are in labor, but can’t come into this labor and delivery and it’s a pretty small rural hospital, really, it was a private kind of thing. It wasn’t part of a huge network. So it’s not a huge fancy place. So the hospital is dealing with their own constraints besides me. Taking up this room, progressing really slowly. Around 6pm They say you know your fever is starting to go up. We need to start doing fetal heart monitoring to make sure that the baby is safe while your body temperature is increasing. You know, we went to to walk we want you to do things to try and move things along. Because if you don’t, and that’s what they started telling me around six o’clock that evening, so 18 hours after I got to the hospital. If you don’t, then we will do a C section. So that kind of also starts weighing on my mind like oh my god, am I not capable of giving birth? Am I going to have to have a C section?

 

So you know, I’ve got all of that going on. I do the walking they give me more pain meds, they increase I think probably the day to start working on the contractions and around nine o’clock. I went ahead and took the epidural, the first epidural

 

P: Oh wow, 

 

N: labor doesn’t progress. nothing’s really happening. Around 11 o’clock. They come in and say you’re going to push I think they weren’t declaring me to be around nine centimeters dilated, but by the measurements of the contractions I was having something should have been happening. They criticize the way I’m pushing and say you’re not doing it right. This is how you do it and 11 o’clock goes by and they keep making me push and I’m pushing according to readings on a machine. Not according to my body. Like I’m so out of my mind. I don’t really even know what’s going on. Like I’m I’m desperately afraid of what’s happening right now. And it came to like 1130 and the nurse went and got the doctor and said, You know she’s pushed, nothing’s happening. They decided your body temperature is too high. At 1130. They decided you’re going to have a C section so they started prepping that they started checking my epidural. I could feel where they were poking and all the tests that they were doing so I had another epidural and the anesthesiologist that came in and did it. He had to come in from home wherever he was at to do it. And he just said I’m going to give you two to make sure that you get through the next however long it’s going to take you because again the hospital has a lot of other constraints they were dealing with. He wanted to make sure he didn’t have to do it again right before they did the operation. 

 

It was between 1130 and 1145 or so they do the extra epidurals they have my husband and they put him in you know the full HEPA suit with his beard cover and all of that and 

 

P: wait How are you feeling? Are you are you upset or where are you? 

 

N: I’m drugged out of my mind at this point. I’m still shivering with fear but I just like so out of my body that I I’m I’m not capable of giving consent. I’m not capable of not giving consent. 

 

P: Yeah, 

 

N: I’m just I’m just going along with it. I’m desperately afraid of what’s happening. I’m in fear. I’m disappointed because, you know, I never thought that I would need the epidural. I never thought I would need the pain meds and I’ve taken all of that and now they’re telling me that my baby is in danger. Heart rate might be low that my body temperature is increasing, who’s going to be born with an infection? Just fear.

 

P: Okay, so this is the issue of fever if the epidural is a catalyst for a fever, but it’s a non infectious source, then we’re not worried that the baby will be born with an infection. Some theories suggest that the epidural along with other factors may induce an inflammatory response in the mother’s body. If this is the case, then it’s not likely that something is transmitted. To the baby and the baby doesn’t need antibiotics. So although we don’t have a definitive answer yet to this, this is an, important focus of study.

 

N: Yeah, everything was here. Everything was saved my life saved my babies life

 

P:  yeah, 

 

N: and they went we went into labor and delivery and the C section was fine and maybe boy was born. And they put me in a room and my in laws. Got to see my baby before I did. 

 

P: Wow. 

 

N: Yeah, yeah. And looking back that was one of the thing that was hardest for me, especially, you know, in the postpartum recovery was they put me up in the surgery board. They did the surgery. I saw that like they helped the baby’s butt up like you have a boy here he is. And they cleaned him up and took him away. And then they took me to a room to get cleaned up. And I don’t even know what happened what they were doing. You know what happened while they were cleaning me up but they gave me a picture. A photograph of this naked squirmy little thing that had salve in its eyes, you know had on its head and like, that’s how I got a picture. And, and that was like, again, like so surreal. So out of body. There’s not nobody nothing in my arms. My belly is soft and squishy. And I don’t have a baby. And, you know, we had we had called people before I went into surgery just because you know, again, kind of like the three months rule with announcing your pregnancy. It’s you call people because what if something happens while you’re in surgery? Which again shows how fearful we were? 

 

P: yeah

 

N: what if someone dies with this C section. So my in laws were at the hospital. My mom had come to the hospital and my husband followed the nurses with the baby to see them wash baby after he was born. And he has very fond memories of walking into the room and talking and, and my son like instantly looking for him recognizing His voice. So 

 

P: yeah, so that’s cool 

 

N: has fond memories. Yeah. But it was I don’t know, maybe an hour before I got to even see him. And then like, just the surreal moment of is this little thing. This score me a little baby my and having them that first hold your baby. 

 

P: It feels like you’ve been put through a very weird version of a birth in which you’re present but not entirely and they’re like not treating you like your president at any point. Right? It’s wacky to criticize you’re pushing Oh, you mean from the 1000s of times. I’ve done it before and you know, 

 

N: absolutely

 

P: the consent thing is weird and shuffling too often. You have the baby off to different rooms, like Okay, we’re done with her. Let’s just that’s just weird. 

 

N: Yeah. And you know, at the time, I don’t have the presence of mind or the perspective that I gained over the next few years to know to say something’s wrong with this. Yeah, yeah. You can’t say what you don’t know. And I absolutely did not know in that moment. 

 

P: But it sounds like it fell off. You have nothing to compare it to.

 

N:  Right. But it just has nothing to compare it to. Yeah, yeah. So you know, then I have the whole hospital stay and you know, people come to see the baby. And I was I was really dedicated to breastfeeding and that didn’t really work well, and baby was kind of grumpy. And it turned out that he had high bilirubin so he was orange and they wanted him to lay under this light. So not only do I have like the surreal meeting of my son, but now they say don’t hold him put him under this light. You know, don’t interact with him except to feed him you know in the hole coming in all the time to check your temperature so you never really get any sleep and just all of the things just was not a great bonding time. 

 

P: Yeah, 

 

N: my mom came to stay with me which really felt good, which was really good. Besides that, just the birth experience of not being considered an active participant in the birth to a person to whom it was happening, that they had to deal with in the process. 

 

P: Yeah, all that sounds really hard to manage emotionally. And certainly your experience didn’t match your expectation at all. What’s postpartum like? 

 

N: My dad came to stay with me after the birth, which was an incredibly generous gesture on behalf of my dad. But in hindsight, and even in the moment, like it was so awkward, like my parents were splitting up in the moment. My dad was like, one upping my mom by being able to be the one who was there. With me. He is not really a baby or a kid person. He was trying to like treat me like his kid. And at the same time, allow me space to be a mom. It was really uncomfortable. So I have these five days, you know where my husband is gone. He had to go back to work and I have to deal with this and driving back and forth to the doctor and baby not nursing and nobody. I had zero support of people saying yes you can rescue they were all saying Oh, baby’s not latching right give him formula. Like no person said, Oh, he’s not laughing. Let me help you. 

 

P: Yeah. 

 

N: And it was only my stubborn persistence that did that but he finally latched on to finally nurse and I finally did that and when that got easier, then I get this you know, whole emotional wave of you know how did that happen? And I think it was probably after my second child was born. But I look back on that time now and I say that that was trauma in my day.

 

P: Yup, yup

 

N: I knew that it wasn’t right that what happened wasn’t right and after baby was born, the next morning the surgeon had come in and you know, I expressed to him my disappointment in what had happened. And I said, is it going to be possible for me to have a vaginal birth in my next pregnancy? You know, I’m already planning my next one and I just got the first one in my arm. And he says, no, no, no, V backs are dangerous. You know, in the 90s. We pushed everybody to do it. It was this big thing and we damaged a lot of women, we damaged women in the V back process and we don’t do that anymore. So if you ever see sex and you always have a C section, and besides, your hips are too small, you’re really too small of a person to be giving birth anyway. And that was just that was his answer. And it kind of was weird in the moment when he said that because my mom might know again, my example in birth is smaller than me. And she had these three babies naturally and and she was fine. So how was that the case? And it was about 18 months. I finally am starting to heal. I say, you know, that was a really sucky experience. I never want to have that again. I know I’m going to have kids in the future. And I’m never doing that again. And you know, I start reading things on the internet. I start watching YouTube videos, and around the time that I’m thinking about all of this, we got pregnant again. Like we weren’t trying it. We weren’t not trying but it just happened. And it was good timing and it was right. And so I’m pregnant now. And I’m thinking about all of this, and that freaking doctor was absolutely wrong. I am capable of giving birth and I’m gonna prove it to him. 

 

P: Thanks again to Nicole for sharing her experience. With this first birth.

Her experience of the hospital has a steep learning curve that she uses in future births her attempt to get the birth she was hoping for.

Thanks again. Thanks again to Nicole for sharing her story. Her experience in the hospital has steep learning curve that she uses in future births and her attempt to get the birth she was hoping for. Unlike many women who go into birth with a fully formed birth plan, it calls hoping to avoid another experience. She feels like a disposable contributor to the whole event.

Episode 59SN: Experiencing a Late Term Abortion: Kate’s story

Today’s episode features the story of an extremely challenging pregnancy that ended in a late term abortion, which was difficult for many reasons, and made more so by the politics and legal apparatus around abortion. My guest was well into a pregnancy that felt off to her in ways she could describe, but which didn’t trigger any particular medical action, because first, the diagnosis when it came was for a very rare condition, and secondly, she made it past the 20 week screen with no visible issues on ultrasound. That my guests first pregnancy was visited by a significant hemorrhage and was By comparison, the easier pregnancy gives you some sense. One thing she says that I think bears repeating upfront is that extreme circumstances sometimes lead to extreme actions. 

To connect with Kate:

TFMR group support at Ending a Wanted Pregnancy

Coaching and blog at Nightbloom Coaching

Esquire Magazine article about Dr. Hern

https://classic.esquire.com/article/2009/9/1/the-last-abortion-doctor

Statistics on Dandy Walker Malformation

https://medlineplus.gov/genetics/condition/dandy-walker-malformation/

https://www.ninds.nih.gov/health-information/disorders/dandy-walker-syndrome

https://my.clevelandclinic.org/health/diseases/6002-dandy-walker-syndrome

CDC numbers on abortion

https://www.cdc.gov/reproductivehealth/data_stats/abortion.htm

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. Today’s episode features the story of an extremely challenging pregnancy that ended in a late term abortion, which was difficult for many reasons, and made more so by the politics and legal apparatus around abortion. My guest was well into a pregnancy that felt off to her in ways she could describe, but which didn’t trigger any particular medical action, because first, the diagnosis when it came was for a very rare condition, and secondly, she made it past the 20 week screen with no visible issues on ultrasound. That my guests first pregnancy was visited by a significant hemorrhage and was By comparison, the easier pregnancy gives you some sense. One thing she says that I think bears repeating upfront is that extreme circumstances sometimes lead to extreme actions. 

I’ll let her tell her story. 

 

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



Kate: Yes, my name is Kate Carson, and I’m from Massachusetts. 

 

P: Okay, wow, fun. We’re going to talk about families and so maybe we should start this conversation talking about the family you came from and how that may or may not have influenced your ideas about the family wanted?

 

K: Absolutely. 

 

P: Do you have siblings? 

 

K: Yes, I have a younger brother. He’s like two years younger than me. I grew up in a family with both my mom and my dad and my brother. And I have a pretty great family of origin. You know, we would eat dinner together every night at six and we did family vacations together and it was a really solid place to get a start.

 

P: And did you think growing up I want to be a mom.

 

K: Absolutely. Yep. Being a mom is the only thing I ever knew for sure. I wanted to be

 

P: oh well, that’s awesome. So let’s fast forward to the being the mom part.  Was it easy to get pregnant?

 

K: You know, the first child didn’t feel easy to me at the time. But if I known then what I know now I would say yes, that was super easy. It took us five months and then we got pregnant. And it was a beautiful pregnancy. When I was pregnant with my daughter Elsie. I was sick for for the beginning. But then the fog lifted and I was just glowing and I felt incredible. And I loved being pregnant with my first pregnancy. 

 

P: That’s awesome. And how was that birth?

 

K: the birth itself was good. I had planned a hospital birth and again, if I had known then what I know now I might have made some different decisions and different plans but I labored for like 19 hours and then I was tired and I said now I’m gonna get the epidural. So I got the epidural. What’s difficult is I’m a puker, not in life, but in pregnancy and birth, so I was vomiting a lot and that was really exhausting and distracting from the process, because it was also sort of one of those people’s a little afraid of vomit. So they gave me some antiemetics and that helped. And when I did have my baby, I was you know, on my back and they brought a mirror and I really liked that they brought a mirror I just remember her head and merging and there were these decreases in her skull and my husband and I just looked at each other for a second like is this okay? And then we looked at the nurses, and they seemed totally chill and we were like oh it was be normal to come out like a raisin. 

 

And she was born and they had to suck out her lungs because of the meconium. So it wasn’t perfect you know, like she was separated from me for a few minutes at the beginning. If I had been better supported to move around. I might not have needed the epidural that kind of thing. But it was the hospital it was the is the hospital I chosen. It was the birthday of planned for. I had her vaginally. There was a little bit of tearing that much it after a few hours after I had a bleeding emergency and that was not great. That was quite traumatic. 

 

P: Let me slow you down a little bit here. So first question is you didn’t get the epidural till 19 hours in because you were imagining you weren’t going to get one at all. 

 

K: Yeah, that was that was the plan. Okay, 

 

P: you can see the birth is something that’s very hard to plan for because there’s no experience, no experience like it and you have no idea how exhausted you’ll be right until you get there. And then you had a hemorrhage or what happened after

 

K: I did…I had a hemorrhage and it must have been happening in my womb but it was blocked because it was several hours after the birth. I’d eaten I finally stood up to brush my teeth. And it was in the bathroom. I was standing there. It was just like I looked down. It was a small bathroom but I had totally covered the floor was what like the entire entire bathroom was a pool of my blood

 

P: goosebumps. Yikes. 

 

K: Yeah. And I looked at my husband and he looked at me and said call the nurse and he went out in the hall. That was his first impulse was to go out in the hallway and he caught the nurse coming in the hall and he said my wife needs you. she’s bleeding. She needs you. The nurse. Not come. She gave him the Oh, like she didn’t say this out loud. But I know how nurses feel about husbands and blood. You know, she assumed he was being a worse and she went on with her with her. 

 

P: Wow. 

 

K: So I was still standing there looking up at my reflection in this pool of my own blood. And seconds were ticking by and the minutes were and I just looked it up and I was like pull the string. So my husband pulled the string and when they pull the string they have to come so the nurse came back in and she she looked annoyed she was visibly annoyed when she came back in and she took one look at me. And then I could see she was afraid. She was afraid. And I think it was the kind of fear where it was like, um, like she dies on my watch. And I didn’t come you know like it was it was very bad.

 

P: But also scary for you to see her scared. 

 

K: Like totally, absolutely. 

 

P: So how are you feeling physically like are you feeling faint? Are you feel totally fine.

 

K: That moment? 

 

P: Yeah. 

 

K: I was feeling I call it crisis consciousness. So they pushed me down on the bed and they were trying to save my life but to my body to me it felt like quite a violent, extreme thing to have happen where they push you down on the bed. They’re really pumping my body on the womb to try to get it to contract against smaller things are going in every orifice. They’re suppositories going in my anus. They’re like things are putting in my mouth. They’re putting stuff in my veins just to try to get the uterus to contract and stop bleeding. And then the doctor comes in and with love goes on up to the elbow in her hand into my poor body. They just had a baby all the way up to the elbow, and basically wiping out like grabbing for any placenta or anything that was left in the womb. 

 

There was no time so the pain medication was not Kicking in yet. So that was way worse than the birth. When people say birth is the worst kind of pain to me birth has a certain kind of intensity in the body like a really extreme physical power and intensity that sometimes includes pain, but it’s not a pure pain experience. This was a pure pain experience, and so it was scary and it was painful and when I was recovering from my birth, I was also recovering from that. I did not need a blood transfusion fortunately, but it was borderline and they kept waking up the thing about hospitals they wake you up all night long when you’re there. Pretty strange because I really feel that sleep is like the most important thing to healing both physically and emotionally. 

 

So they would take my– they must have been testing my hematocrit or something, testing to see what my iron was to decide whether or not it would get a blood transfusion. My baby, of course had been taken to the nursery during this and my husband had been sent out of the room. When I was discharged from the hospital. We all were invited to go talk to a lactation consultant. So I went down the harmful times that lactuation consulting there were a bunch of all the mothers on the ward were there and the fathers to the lactation consultant asked any of you send your child to the nursery? I raised my hand and she said Did she get any formula? I said yes. They said that they fed her from a syringe a couple of cc of formula. And she pressed me down. She made an example of me in front of all the others. She told me that I would not be successful breastfeeding as I had let them take my daughter to the nursery told her she told me that it was like he would never latch because of that. That that I basically like screwed my entire bonding opportunity. 

 

P: That’s crazy. That’s crazy. What while you’re down I’ll kick you if that’s fine. 

 

K; like he’s like this is supposed to be support for new mothers Right? Like, even have a lactation consultant now to support new mothers. My breastfeeding journey was difficult, but not for latching reasons. And I successfully breastfeed my daughter but even if I hadn’t, you know, yeah, that wouldn’t have been my that wouldn’t have been why all those

 

P: all those things you’re describing suggest weird dissonance between like the medical care that you’re giving the emotion of this whole process, right? They’re like divorced completely and I totally get that they have to save your life in the moment and they need to do the things they need to do but to not have someone there to also be comforting and I understand that kicking your husband out because he’s gonna freak out and it’s terrifying to watch your loved one in this. But then to leave you there as if you’re like, getting a two pulled or something. 

 

K: Yes, 

 

P: on your own. seems weird to me.

 

K: It seems weird to me too. And it’s just even if it was the thing I needed for my physical safety in the moment. feels extremely unsafe in every way like it feels to my body and to my mind, like it is the most violent thing that’s ever happened to me. You know, so it’s so confusing. To have it be like I know my doctor is trying to do the right thing and help me but that’s not my experience of it at all.

 

P: Good Lord. Well, I’m glad you weather that and so sorry that that happened. That sounds like I mean it’s it’s like shocking to hear so I can’t even imagine experiencing it because it’s totally scary.

 

K: I used to be a teacher and now I’m a somatic coach. And so to be a somatic coach had to go through all of these cell processes on myself that I then work with other people, and one of them is a vaginal De armoring process where we do pressure point like trigger point in the vagina and on the cervix. And when I got to the cervix and I applied pressure to the cervix. I got I flashback to this. This is what was in my cervix and I would know enough about my trauma to like usually when I’m dealing with trauma, I’m not dealing with my first birth I’m doing with my second birth but when I went to my cervix versus what was their bleeding event. 

 

P: I mean that’s amazing. I’m telling that like this, this is not the traumatic one. This was not the harder one right? 

 

K: This was not the harder one 

 

P: so you leave the hospital your baby’s fine. So all that is good.

 

K: My baby grew so fast. She was so chubby. My difficulties with breastfeeding were in getting comfortable breastfeeding, but I have made way too much milk. It was super fatty she was thriving. So even the problems they had were not the scary problems. They were uncomfortable problems. I found a really good lactation consultant, really supportive who undid some of the challenge before and the support group and so it was among other moms who are also going through the same things. breastfeeding support. And you know, that part was fine. I didn’t I didn’t have hormonal mood disorders or any I mean, I had some baby blues, but I didn’t have like the postpartum depression. I didn’t have any trouble bonding. I just had trouble figuring out how to breastfeed without pain and eventually with the help of doctors and lactation consultants that settled out 

 

P: okay good

 

K:  yeah, so I would say that it was really good she’s she’s still very strong and bright and calm. And she’s she was an easy baby and she’s very much the same person. Now she was then

 

P: that’s awesome. So how long between the birth of the first child and the pregnancy for the second one?

 

K: Well, there were three miscarriages in there. But I would have been on track to be having a baby like three years later, so two and a half years ish until I was pregnant with the next one that I consider a baby No. First miscarriage was a blighted ovum. And the next one was fairly early, and then the next one was even earlier. So it was hard to go through that and that’s when I sort of learned like, oh, five months of trying and then having a healthy baby is actually not a hard journey to get pregnant. Like now I’m having these losses and I’m afraid what does this mean? What does this mean about my body? What does this mean about my fertility? Right? 

 

P: Yeah, that sounds much more complicated and so interesting, because I think all of us for the first one imagine the minute you start trying to be pregnant because you’ve spent your life until then, like worried that you get pregnant right when you weren’t ready or

 

K: Absolutely my whole life until then. I mean, I can’t tell you how many years I was on the pill. I was on the pill before I was sexually active because of really bad cramps. And then I continued on the pill when I was sexually active. I would sometimes use condoms as well. I had been so careful because it just felt it’s interesting to grow up feeling like my womb is like a ticking time bomb of catastrophe, right? Yeah. Not the relationship I want my daughters to have to.

 

P: That is a really good way to describe it. It is like a tricky, tricky relationship there. So now you’re pregnant and this one sticks. 

 

K: This one sticks, and I’m glad that it’s sticking but I’m also very anxious because of all the miscarriages I’ve had before so it doesn’t it doesn’t feel real for a while I’m very sick for this pregnancy. Second, on second sticky pregnancy. And I’m just like, sick all the time having a really hard time making it through the week. I remember I would take my daughter Elsie was two at the time, take her to the grocery store because she could just like grab up to go meal and I would sit there and eat and I remember there was a week. I could not eat and I know how bad that is. I remember my midwife being like you have to eat but like, easy to say you have to eat. It’s really hard to put food into your body when you’re as nauseous as I was.

 

P: Yeah. And not excited to throw up.

 

K: Yes, I’m fearful of vomiting. But there was this one day at the end of that week where I had asked him not wanting to fast where I just saw the pepperoni pizza and I was like, yes. Nobody asked him a few pepperoni pizza. So I bought one and I ate it and then it got back up and went through bought another one and I ate it and it was like, okay, okay, now I can eat. The pregnancy was a little bit difficult in other ways too. I developed sleep apnea during this pregnancy and that like I was falling asleep on the park bench not just in the first trimester when your hormonal exhausted but like into the second trimester. 

 

You know, I was like 25 weeks and falling asleep at the park because I wasn’t sleeping at night. And I called my family physician. And he immediately referred me to a specialist. The specialist was a neurologist and I went in, he looked at me and he goes you’re pregnant. And he said you don’t have sleep apnea. You have restless leg syndrome because you’re pregnant. I said, I’m quite sure I don’t have restless leg and my husband says I stopped breathing at night. Here hears it. He witnesses it. Can I please have a sleep study and he turned me around and I stood up for myself to a point but not far enough. I did not make enough of a nuisance of myself to get that sleep study and I went home defeated and continued having sleep apnea. 

 

So years later, I did get the diagnosis and I got the CPAP it feels terrible to be discounted that way in your pregnancy 

 

P: yes, yes. 

 

K: Meanwhile, with my obstetric team, I would tell them that I was very anxious about this pregnancy. And maybe because I was using the word anxious. They will be like okay, it’s a problem as anxiety, right? They would take the heart rate they would like measure me they’d be like, everything’s great. And I’d say, you don’t understand like something feels really wrong with this baby.

 

P: No one has explained or understands what led to the repeated miscarriages at this point. 

 

K: correct. My first miscarriage I got a DNC so you go on the internet. And the internet is convinced that everyone has Asherman’s syndrome, which is scarring and adhesions of the womb and there are some women who do so I’m really glad these groups exist, but it there’s a real bias pushing people towards that assumption online. And so I thought I had Ashmans so I got seen by someone who put a scope in my uterus and took a look around in the walls of my womb were very smooth and very pink just the way they should have been. So that was not my situation. I still don’t know why I had those miscarriages. I have no reason why anything that happened to me happened. 

 

P: I was kind of imagining that your anxiety is to some degree related to this uncertainty about what was going wrong before but it also sounds like your body has some intuition that like something’s not quite right.

 

K: Both of those things are true. At the beginning. It was just based on the path of miscarriages I’ve been on and not having any reasons and just like wanting this so badly and feeling so out of control of it. Right. Is very normal. A lot of people Yeah, in pregnancy. The pregnancy progressed, different things felt wrong, like things I could actually point to felt wrong. And I got my scan at like, what like 19 weeks 20 weeks when I got my anatomy scan. They left the room and didn’t come back for like a half an hour. And my husband and I were looking at each other and being like, are we done? They didn’t say goodbye but they also didn’t say to wait. We left and my midwife called and was like, Why did you leave? And they said because I thought it was over. They ended up escalating us for a closer look. I thought they saw something on that ultrasound and they escalated us for a closer look like teaching hospital the level two with the maternal fetal medicine specialist. He took a look and he was like a long look like an hour long like and he said everything looks perfect. I’m so glad to give you this news that everything looks perfect. The genetic counselor was ready to like break out the champagne. And I remember looking at her and saying how short is he? Should we come back for another look like how short is he that everything’s okay? And she said like by overturning that concern. He basically is staking his job on it. That everything’s okay. She’s so sure we said okay, and we went on our way

 

P: and they didn’t tell you what what they saw that caused them to ask for the higher level.

 

K: Eventually they did but no not not when they sent me for the high level they were like just don’t just don’t google it. Just don’t google it. You know, when it was dandy Walker malformation was the thing they thought they saw and they sent me that’s a brain malformation, a set of brain malformations and they sent me to him and he was like No, this baby’s fine.

 

P: Dandy Walker malformation is a brain malformation that occurs during embryonic development and affects the cerebellum area of the brain that helps coordinate movement and is involved in cognition vision and behavior. With this condition, the cerebellum is absent or very small. In some cases, like Kate’s it can also affect other parts of the brain. 

 

K: Well, that hung over me too. 

 

P: Yeah, 

 

K: right. So that was one of the other things that was hanging over me and then this thing I could really point to was the way my baby move was so weird way my baby moved in my womb was so different than her sister. So and Elsie healthy baby was moving around in the womb, sometimes she would be very active and sometimes she would rest. Sometimes she would flutter and sometimes she would like kick her elbow or roll right like there were multiple sensations made sometimes were very active and sometimes there were long periods, hours long periods of rest, while she probably slept. This baby moved all the time. 

 

P: oh, That is weird. 

 

K: No rest. And this baby moved the same way all of the time, and it was spastic tremors and spasms all of the time. So when I would try to say this my medical team I would say something is really bothering me. She moves all the time, and they’d say, that’s great. I will tell you I don’t think there’s any literature on this. It’s been several years since I last looked. I don’t think there’s any literature so they would have no way of knowing what I was talking about. But I knew experientially in my body that it was very, very different.

 

P: So I’m guessing this as a rare condition is a rare condition. It’s really hard to be at the edge of medical understanding where you have a sense that something’s wrong but no one is echoing that back to you because they don’t know what they’re looking for.

 

K: Exactly. They believe it’s one in 10,000.

 

P: Okay, that one in 10,000 statistic may have been what was available and she was going through her pregnancy in 2012. But now doctors estimate that it’s roughly 1 in 30 1000 But Kate’s case is even more rare, given the specific complications that her pregnancy involved. To put them in perspective. According to the National Weather Service, your lifetime risk of getting struck by lightning is roughly one in 15,000.

 

K: But most people end their pregnancies rather than carry when they get this diagnosis. So even though 1 in 1o000 pregnancies may have this not one in 10,000 births.

 

P: Right. Okay. And what is the diagnosis and when did you get it?

 

K: Well, wasn’t until later when I was trying to prepare for my birth at a birth center. And my midwife was asking me how I was feeling and I expressed continued anxiety she said, You know what, we need to get a look at you because I don’t want you heading into your birth feeling this way. So she leveled me up and sent me in for an ultrasound. I was 35 weeks pregnant when I went in for that ultrasound, date of last menstrual period and they did the ultrasound and I was being very chatty. And the technician was being very quiet. I thought she was just having a bad day. She was I didn’t know why. At the very end, I was talking about how having another baby like, I know she’s going to be different but like part of me just imagines that all babies are the same. It’s gonna be just the same as when I had my first baby. And she looked me right in the eye and she said, this one’s different and sort of like froze

 

P: that’s chilling.

 

K: And then she sort of shook it off and she said they’re all different. All babies are different. And she left the room and she got the doctors and the doctors came in. Remember two women clipboards glasses, white coats. I’ve never met them before and they said, you know those problems we weren’t seeing last time you were here. We’re seeing them today. Your baby has dandy Walker malformation, and she may be missing her corpus callosum which connects the two hemispheres of the brain.

 

P: As you can imagine, the cerebellum is already compromised, and now the fetus is missing another part of its brain. As Kate mentioned, the corpus callosum is a C shaped nerve bundle that connects the two hemispheres of the brain allowing them to communicate to be born without this nerve bundle. can lead to a whole host of issues, including seizures, feeding problems, delays and holding the head have racked impairment of mental and physical development and or accumulation of fluid in the skull called hydrocephalus.

 

K: So she has several brain anomalies and they pointed it out to me on the screen. Her brain should have looked all gray all light gray on the screen, but there were big patches of black and that’s where her ventricles had swelled with fluid where you know where there should have been gray matter, but instead there was just fluid. She would eventually probably develop hydrocephalus, but no one could tell when that would happen. If it happened before she was born, it could swell her head to undeliverable proportions. They were telling me all about like, I would need a C section. And I remember I was like, but I want to breastfeed and they were like, Oh, honey, like, I don’t think you understand. You know, I was in such deep denial that I was clinging to things like but I want to breastfeed but I wanted to give birth at the birth center. But if they were like, you’re so far out of that plan right now, but I just couldn’t hear it. And the only thing I heard when they said after telling me all about the plan to stay in the hospital and resuscitate the baby basically told me, We can offer you adoption. We might be able to offer you abortion, but we just don’t know.

 

P: So what’s the prognosis for these kids?

 

K: It’s a really good question. They wouldn’t give it to me that day. But two days later, I had an MRI and I met with a neonatal neurologist. And he said that my baby given the extent of the missing pieces in her brain was not likely to ever walk, talk, support the weight of her head or coordinate swallowing she wouldn’t be able to swallow. I remember hearing the swallowing and saying this is very, very sad, but I know we don’t want a feeding tube. If this baby cannot thrive, we do not want a feeding tube we want her to pass naturally. And someone on my team said you can’t refuse an infant feeding tube. That’s not within what’s legally available to you know, that was when I sort of was like, oh my god, like what? Like, and they kept saying I couldn’t read to hospice because this was non fatal, but they also kept telling me it was going to kill her probably very quickly. So,

 

P: when they say non fatal, though, they may not immediately

 

K: that means I don’t honestly know what they mean. I didn’t know what they mean. From what I can tell. It means 0% of these babies survive more than x number of hours. So not just immediate but complete. And there are so few conditions for which there’s like no question of when a baby dies. You know what I mean? 

 

P: Yeah, 

 

K: but I will tell you that I talked to my friend after later who’s an NICU nurse. She has had a few babies like my baby and she has never seen one leave the hospital.

 

P: Wow….I assume it’s completely overwhelming,

 

K: it was completely overwhelming. And when he just kept saying like all these things, she won’t do this. She won’t do that. She won’t. He didn’t say well, he was very he was very careful with his language. I’m a scientist too, so I recognize what he was telling me. She won’t likely it most likely she will. If she walks it will be after many years of training with braces and therapy. If she talks it will be a few words after intensive verbal therapy for many years. He wasn’t making any promises but he was showing me the spectrum. The outcome was really like this person will have a very limited life if she lives at all.

 

P: And the reason that there’s uncertainty in part is because they’re looking at a scan of her brain in utero, so they can’t quite make out exactly what’s missing.

 

K: and Even if they could the brain is so plastic the brain is amazing. It is totally vital and important to life. So that if there’s a problem that can be a huge problem, but it is also very plastic and that neural networks can form. You know if there’s a normally a message that would go through the corpus callosum across the brain, sometimes the brain can figure out how to make a different network that we were using. Right? So that is how you get your people who really thrive more than expected is that their brains are plastic. Also the brain development is not complete until you’re 25 years old. So if you’re lucky and your brain is able to grow in line with your needs. Best case scenario for my child is that she would have lived, I don’t know maybe to the age of 10 Maybe that she would have been able to do a little bit of mobility for a little bit of time every day after much physical therapy. It’s you would have been able to communicate mostly non verbally. That’s still a very limited life. Right? And when I saw

 

P: it sounds like there’s so many motor functions that don’t work like swallowing and walking was confusing to me is that there are things there that are so limiting. It seems like wild to say in a couple of years. You’re gonna live with a feeding tube for a couple of years with no

 

K: children like my baby would, as long as they live with me either feeding tube or a port right like a child like that would definitely get a port they were also telling me that you know this is a seizure disorder. It will eventually result in hydrocephalus, which will cause further brain damage both the seizures and the hydrocephalus. So if you want her not to get worse as best, she would require brain surgeries. So there was this like really invasive surgery that she would need maybe multiple times over her life. Yeah. would never make her better. It would just slow down the rate of getting worse that would protect against against getting worse. But It’s painful. To all of this and being like all of these things she can’t do. I can put it in my head now because I have a friend who has a child who has survived to to into childhood with this disease or something similar to it. And so I can imagine now because I’ve done my research, but this was really acute early days. And I just couldn’t picture my child and I just wanted a picture in my head of how my child would be not just how she wouldn’t be. I asked him, she won’t do all of these things. What do children like mine do? Do they just sleep all the time? He winced and he said, children like your child are not often comfortable enough to sleep

 

P: God, taking away everything. Good lord. Yeah. So will they will they counsel you about like what to do or

 

K: sort of? It’s tricky. It’s very, very tricky. Now I do this kind of polling. So I understand how it’s tricky. It’s very tricky to hold someone in a values based life and death decision making out, pushing them or shaming them. Right so I did receive counseling from a genetic counselor. And it’s really like just this open space where you’re like, what do you need? And I was like, Well, I need to know how much this is going to cost. And she’s like, Okay, I’ll get you a social worker, who’s going to tell you how much money you need to raise a child like this in the world. I never got that far. That night when we were going home. I call my doctor said I want all my options like I want. I want them all. Please call me back with everything that you have. 

 

And so she called me back I already knew I talked all day with the intervention. Team. So I already knew that like we push for life option, but she called me back and she said, here’s the adoption number. They specialize in medically complex children here and she said, I’m so sorry, but if you want an abortion, we have to hang up right now because you have to call we had a half an hour I had to call in the next half an hour or the week would have been over in the timezone I was calling she said if to call before the end of the workweek mountain time. I remember thinking, mountain time. Right. Now, what is she talking about? But I didn’t want to provide any friction. So I just took the phone number. I said thank you. I called it and the woman picked up in Boulder, Colorado. And she explained to me she’s she again she said I’m so sorry. But if you want this abortion, this was a Friday night she said you have to be on a plane on Monday. You have to show up in Boulder with $25,000 on Tuesday.

 

P: Oh my god. Just being pushed to make a decision that fast already seems like whoa, whoa, whoa,

 

K: I know, I know. But I was 35 weeks pregnant. I did not have time. I did not have time I was 35 weeks zero days pregnant the day that I called the clinic. And she said this is the thing like we don’t have time. It’s a four day procedure. So putting it off till Tuesday is like the latest. We can put it off right this was until 2012 to so Roe v Wade was in place. But the reason I could not be seen at home is because Roe v Wade did not protect my case because it was after these opposing point of viability, which had always legally been measured dates wise and 25 Weeks was about where it was at I was going through this hellscape

 

P: will you just remind us viability just means you can live outside the womb. That obviously doesn’t mean unassisted.

 

K: It’s another one. Fatal where it means nothing to me. Now that I have been down this rabbit hole. What does viability mean? Supposedly it should mean that if you give birth to that baby, you can live without the life support of your body. But my baby clearly couldn’t, right? Because even the feeding tube even though it’s a small intervention, it is still an intervention. So

 

P: well feeding tube forever, right? I mean, it’s one thing to say they’ll need a feeding team for you know, two months until something develops, this is not getting better. So that’s a different thing entirely.

 

K: There’s no getting better from this particular constellation of brain anomalies. There’s only like, you mitigate it, and maybe the brain is plastic enough. To have a good life or like you die real fast. That’s it.

 

P: Well, it sounds like maybe you live for a little while with pain and no way to communicate that well or feel better. And then you die slowly or you die quickly.

 

K: Yeah, I mean, it when it comes down to this, it gets so hard because it’s like, life is beautiful. And even when it’s brutal. It can be really precious and important. And so sometimes people choose to go forward even though they know what the pain is going to be. You know, and I really respect that and I want to hold so much respect for that choice because it is beautiful. Life is a beautiful gift. Sometimes it is brutally hard. And the gift I chose for my baby was peace because in my values for my family. That was the gift I wanted to give my daughter was the certainty of peace. So I always think of it as life and peace and like most pregnancies, most babies, they get to happen both and of course we want to give them both. We all want to give them both. But sometimes like in my situation, I could really only guarantee one of them.

 

P: Yeah I mean for me the hard thing is making that choice for someone else. Right. 

 

K: totally, totally

 

P: So so it’s not I mean, you might choose that for yourself but to choose for someone else to live in out of discomfort is so I mean and I agree with you like it is amazing that other people make a different choice, and I applaud them for that. But I think I would live with guilt of inflicting this on someone else, right knowingly. It’s different when you know, right? 

 

K: Totally. And for me I feel so strongly about it for my baby and for my body. You know, there were 48 hours there between my ultrasound and my MRI. I did not know that abortion was available. I did not know that it was an option they had told me maybe and I had talked to them about it and they had said, No. Where did you use to send women and they say they said oh we used to send women to Kansas but we can’t anymore. And the reason they couldn’t anymore is because Dr. Tiller the abortion provider in Kansas was shot in the face at church because of assassination. Because of domestic terrorism against abortion providers. 

 

P: Oh my God

 

K: Yeah, so and I knew that when she said that, somewhere in my memory, that new story popped up and I was like, oh my god, what am I getting into? So there was this time where I didn’t know there was anyone who would take me I was so pregnant, like I was so pregnant. And yet I knew for sure that I couldn’t do the only path that was legally available to me at home. So I was making all these contingency plans because this is desperation right

 

P: wait, why is it not available in Massachusetts.

 

K: So it used to be you see if I can get this right and please let anyone who knows more about the lock correctly if it’s not believe it used to be that Massachusetts it was legal to provide a termination of pregnancy up to 25 weeks from conception. However, instead of measuring from conception, they would measure from date of last menstrual period. I don’t know why did that bullshit, but it shaved two weeks off. Either way. I was 35 weeks and I was well beyond. Now Massachusetts didn’t have to provide until 35 weeks because Roe v Wade only provided to 25 weeks from date of conception. So they were in line with Roe v Wade. Now I have fought tooth and nail along with several other really prominent activist mothers like myself. We have expanded the laws in Massachusetts called the Roe Act that allows for quote unquote, fatal or lethal anomalies first of all to be determined by the doctor so that we do not actually say what’s legal we let the doctor decide what’s legal, and second of all, to be terminated at any stage of pregnancy, in the case of these legal anomalies. Now, as you and I have discussed, I don’t think my baby would qualify, we thought based on the way they talk about legal anomalies. It was based on the way they talked about them. So I think it still wouldn’t help me but it still would help someone who had say a diagnosis of Trisomy 13. But that’s usually picked up much earlier. Much much earlier. It would help someone who had Oh with something that can happen later in pregnancy like I know someone whose baby had a horrible brain bleed later in pregnancy and she might have been able to access his care. I will fight tooth and nail even if it helps one woman, you know, because I know what it’s like to be cast out of care and right now in this environment in 2012 when this happened to me, to have to go to Colorado was a very rare thing. Right now it’s common in the waitlist to Colorado. I don’t know I haven’t talked to the physician lately, but I would imagine it’s at least six weeks long. And if you’re 35 weeks pregnant, six weeks is too long.

 

P: Good Lord. Oh my god. Yeah. So

 

K: I know if you believe that it is morally superior to get an abortion earlier in pregnancy than later then you have to make abortion early as accessible as possible. Because what happens when men’s produce is that everyone ends up waiting and all the abortions happen later. Even for those of us who don’t think it’s morally reprehensible based on dates, it is unambiguously safer for a woman in her body and your fertility to get the procedure she needs promptly than it is for her to wait. So that’s just my plea for everyone to bring some sanity back to this. But in 2012 I went to Colorado because I was denied care.

 

P: I thought you can’t fly after 28 weeks.

 

K: Oh my god, that was a huge source of stress. For me. That was a huge source of stress for me. So it was in crisis mode. And in crisis. You don’t ask any questions you don’t absolutely have to ask. 

 

P: yeah

 

K: So even though this was in my awareness, I did not ask my doctor. Even though my contingency plans were extremely unsafe and illegal. I do not tell my doctor because if I had told my doctor I was going to do something that might kill me, like go off in the woods and have a medically complex child in the middle of nowhere as far away from the hospital as I can get. She either could have hadn’t. You know like, Okay, now you’re putting your life at risk. And I think you’re sort of suicidal and I’m gonna get you this abortion, or I’m gonna get you put in a mental hospital and then you won’t be able to get an abortion at all right? So like, I knew those two sides of the coin, or this sounds dangerous. We’re going to bring a child protective services and take away the child you have because we don’t think you’re a mother. Right? Like, this is what desperation does, is it gets us against a wall like that. So when I went to Colorado, it was like this door opened. This door opened and I am stepping through it because I can live with myself if I terminate this pregnancy and I might die with my other options that I can ethically live with within myself that are in line with my own values,

 

P: And I’m assuming that your partner is on the same track.

 

K: My partner was so supportive, my husband was incredibly supportive. And you know what? I did not tell him either about dangerous plans. I kept them all the way inside. But he was absolutely like, Yes, I will get the tickets. I will book the hotels. This is a week long procedure. This is not a day. This is like a week of my life. And so he actually was so generous as to say at first when we were driving home from the neonatal neurologist and we were in the car. I knew what I wanted. To do, but I couldn’t say it. It hurts so much to say abortion. And so I looked at my husband, he always wants to please me. And he always likes to say what he knows I want to hear. And so when he looked at me and he said What do you want to do? I said, I need to know what you want to do first and I need you not to try to sugarcoat it. 

 

And he said I think we should ask about the abortion. And it was like I had been in his dungeon and it was like the light just flowed in and like I just felt like fresh air and sunshine when he said that because knowing that he was on my team, and then I didn’t have to do it alone. Something that’s so stigmatized and taboo to at least know that I wasn’t completely alone was incredible. And to know that our values were in line around this. It’s a tricky value situation. 

 

So we went to Colorado and we did not have $25,000 But again, I didn’t ask because I didn’t there are abortion funds and everyone listening should know there are abortion funds and you should ask for money if you need it. However, we do not ask but we did ask my parents so I did tell my mom and I said mom, I think I’m gonna get an abortion and she cried with me and she said I would do the exact same thing. 

 

P: Oh, that’s so nice. 

 

K: Yeah. And she asked my dad because my mom has been you know, she she has run our household and been an incredible volunteer in our town my whole life, but she has not earned money for a long time. So my dad’s the one with all the finances in the family. She asked him and he said this is exactly why these procedures exist. Because when you’re talking about abortion of 36 weeks even there is no safe audience like there’s no one who I can say like would absolutely support that. Right. So I didn’t know what he was gonna say but he said this is exactly why these procedures exist. They pulled money out of the retirement early, because you can do that for medical emergencies. And they able to arrange the finances while we live. 

 

Now Oh, I remember you had said you’re not allowed to get on a plane. So this was a huge source of stress for me. I dressed in my husband’s clothes. He’s much taller than I am. He’s just like a much bigger guy than I am and I dressed in his clothes, so they were like droopy. It’s like when you hear about teenagers who are trying to hide a pregnancy. That’s what I was doing. We were in the airport and just thank God that those counters are so high, you know and that I carry small because right and petite woman and I carry small and we couldn’t sit next to each other because we had booked them just just like the day before, you know so we were opposite ends of the airplane and I just was so afraid someone would stop me because if someone stopped me I didn’t know what I would do. 

 

P: Yeah, 

 

K: I actually told my husband before we did this before we went up to the to the site. I said we need a new story. I’m pregnant with twins. That’s why I’m big. Like I really that was the story I gave him. I Now know women who have asked their doctors for a note of travel that is also an option. So unfortunately you can’t do that if you’re in a hostile state. So if you’re in Texas please don’t ask your doctor for a note of travel because it could get you or your doctor in a lot of legal trouble but I went with the big of made up story. 

 

P: Good, that’s smart

 

K: Yeah. No one challenged me good when stopped me. So we ended up in Colorado. The clinic is quite protected. So I remember we went to look at or it just so we know where we would go in the next morning. And we were like Oh, do you think it’s like the bunker with the razor wire? For us? Yes, it is. We see it in just a nondescript hotel. And again, we don’t want to be seen. So I never came in that hotel, the front door not once I waited out by the emergency exit and my husband would go in and you come up in the door. And then go on stairwell. So every time we came in and out of our hotel I would come in and out the side door. It was a lot of shame. And that particular piece was shame I put on myself like no one made me do that. But I was so afraid. That if I came in this big pregnant lady all week and then one day I came in not pregnant anymore. I was just so afraid. What that would be like to be seen that way.

 

P: It’s so sad and crazy to me that at this time when you need the most support ever and you’re going through so much that you also have to reread this totally that this clinic is fucking surrounded by razor wire, what?

 

K: my physician, Dr. Warren is clinics been shut off before you know and he’s an inspiration. He’s incredible. He used to give obstetric care overseas in a country where abortion was illegal. And he will tell you, you can read it. I think there are articles in Esquire. It’s called the last abortion doctors somebody who’s from a long time ago, but he will he will say like one side of the ward for all these happy women with their babies who wanted to have babies and were ready to have babies on the other side of the board. Were all these women like in dying because they were not ready to have babies and had botched abortions and got really badly. So he gives abortion care at all stages of pregnancy is one of the very few doctors in the country who does and he will say why do I do this? Because it’s the most important thing I could be doing in medicine. And he was there for me in 2012 There were two clinics in the country that would take one of them was closed for the week. So Leroy carhart’s clinic in Bethesda Maryland would have taken me but they were closed. And Dr. Horne Hearns clinic in Boulder would take me there’s also southwest women’s in Albuquerque, but they don’t take women as far along as I was it’s only to 32 weeks or 30 It’s not as far maybe 34 It’s not 36 at that much and then since then one new clinic has opened in Washington DC. So that’s another one to know about.

 

P: I can  imagine that you’re in a particularly rarefied group because your problem is rare. Yes. Right. So they just that’s why they didn’t find it until so late

 

K: and often when people end pregnancies for medical reasons. The problem presents itself early in pregnancy. That’s why we do prenatal testing. So in my next pregnancy, I got a blood test with free cell DNA. So I knew that the most common chromosomal problems I knew my baby was chromosomally normal, right with x and y and 1318 21. Right. So some of these things can be picked up very, very early. And some of these things can be picked up later. Like when people might have a heart defect that tends to be picked up around 20 weeks, but the brain keeps developing. So what I find is that brain anomalies are the most often late detected, 

 

P: under diagnosed, right? Yeah,

 

K: exactly late diagnosed or under diagnosed category of malformations. And of course, problems can come up in a woman’s health as well during a pregnancy. But if I had had a problem with my health, and there was no problem with the babies at 36 weeks, I imagine it would have been crash C section and everything would be a celebration. That was not the situation. Of course though, her having a complicated medical situation complicated my health and safety as well. if her head swelled to those proportions. Her low muscle tone made her harder delivery, right. 

 

P: Yeah, 

 

K: there are things that was no longer a straightforward pregnancy. So the idea of going rogue in the woods was quite dangerous. It was really not a good idea. For my well being,

 

P: I mean going rogue in the woods wasn’t high on the list was it was on the list.

 

K: no, it was a last ditch effort. It was like if nothing else, and I didn’t know them, but I do know now, because Dr. Herring told me that if what you really want is hospice and hospice, you should hit up Johns Hopkins because Johns Hopkins has an infant hospice program, most hospitals don’t.

 

P: God..So much more complicated than politics allows for it to be.

 

K:  It’s extremely complicated. 

 

P: So I’m hoping that people in Colorado are supportive. 

 

K: oh, God, I love them my trauma that I have done a lot of PTSD work on everything. Basically already happened. Once I landed in Colorado, I was so well held that even though this was extremely sad, and extremely hard to not have trauma from my clinic.

 

P: good

 

K: Yes, it is. It’s amazing. Not a guarantee, but that’s the way it was for me it was that I felt so safe and so loved in the care of my medical team. It was enough for me to get through it. So day one is counseling, and then euthanizing. Injection. So at the end of a lot of education and testing, just he won’t treat anyone that he’s not he doesn’t feel can safely go through the procedure. And then there’s a lot of like, this is what’s going to happen. Do you consent to it. I signed my consent. And Dr. Pan was my witness. He removes me from my husband for that because coercion would be a terrible thing in this situation. 

 

P: Yeah, yeah

 

K:  And he really wants to feel like yes, this is this is making a decision and they delivered a euthanizing injection to my baby’s heart, and that was just emotionally devastating. Pain wise, it was it was just like an amniocentesis. It’s just a needle, just one shot. Emotionally. It was so hard. And I remember at the end, he asked, How are you feeling? And I just burst into tears. I said, I’m just so sad, which was great for him because he just wanted to know I wasn’t in some sort of medical shock. You know? 

 

P: Yeah, yeah, 

 

K: he gave me some tissues and have been nurse stayed with me for a long time that day. I thought I wanted dinner. We’ve been at the clinic all day and you can only bring book into the clinic. That’s it. You’re well in the book. Because espionage is such a tactic of the right to lifers. And when we left I thought I wanted dinner, but she moved she hadn’t passed yet. And I was like, okay, scrap that and I went back and lay on the hotel bed until until the movement stopped and she passed away. When I stood up my belly, which had been like so high and so tight was just just drooped like the life has gone. She just drooped so hard. That was emotionally the worst part. After that there were two days of laminaria laminaria these little seaweed sticks that absorbed the water from your body as well. So the first day, they inserted them about hurts, but it’s only 10 minutes of my life

 

P: they insert it in your cervix?

 

K: into the little hole in the cervix, and then they pack the vagina so it doesn’t fall out in the packing has iodine in it to prevent infection and then over the course of the day, it gets bigger and softer. That’s a we took a drive into the mountains we just sort of it was like a weird sightseeing trip. We just went around and we’re in nature went out to dinner the next day. Again, they take the old luminaria out put new ones in that day it started getting cramping and I had to take medicine to make sure I wouldn’t go into labor. I remember taking a little walk in a little park and feeling like I’m gonna throw up now. I’m just taking it easy the rest of the day and then the last day the fourth and final day of procedure. This was a Friday this was 36 weeks zero days from the last menstrual period they induced my labor. 

 

So they gave me Pitocin and the contraction started and I came in four centimeters dilated. Do you remember that first story with the 19 hours of labor? I was four centimeters dilated at 19 hours with my first 

 

P: Wow. 

 

K: And this labor was I have never had a child without some form of pain management right like I have had the epidural so I was a little bit afraid that I wouldn’t be able to do it. But as soon as I got into labor, I sort of got into that rhythm of the body. I go way inside when I’m in labor, and when I close my eyes, I actually see beautiful visions. When I’m in labor. It’s like this altered state of consciousness just like almost like a trance state. And that happened and it was very supportive. I saw very beautiful things on the inside of my eyelids and I knew it wasn’t real. It was not not confusing or disorienting. It was just beautiful. So I labored for two and a half hours. And then I felt like I had to pee very, very badly, very urgently very quickly. And so they hobbled me over to the toilet and I couldn’t pee. Now I know her head was in the way she was descending. My body started pushing and I had never experienced that before because I’d had the epidural. And my body just started pushing and I was screaming I’m pushing I’m pushing. abductor hurt was like stop pushing, which is so silly. It’s such a silly thing to say. It doesn’t make any sense. 

 

P: As if you can control it. 

 

K: Exactly. This was not voluntary. This was not on purpose pushing…it was extremely powerful. So I did manage to get on the table and I delivered my baby into Dr. Hearns hands and he does a quick little evacuation of the uterus to try to prevent a bleed like the one I had, but it was not invasive. The way the other one was. I mean, I’m sure he took his scope and went in but it did not feel the same. It felt okay. And then I went back to rest. Then after some time, he brought my baby to me so that I could see her body so that I can do and really glad that they gave me that opportunity. Because I really just had to see.

 

P: Yeah, this seems completely humane. 

 

K: Yes. It is humane… It is very sad and very human. And so I got to view my baby and after him was there and he asked me if I’d like more time but what I knew when I saw my baby is that she wasn’t there. My baby. This is just her body.

 

P: Yeah, I can’t imagine a more caring choice than the one you made. 

 

K: Yes, I don’t want was made already. Yeah, it’s so much love. It was the only thing I could do for her. I did the best I could

 

P: Do they Like do they have a funeral? Or how do you manage it from there?

 

K: No, that’s a good question. So I had signed up for private cremation. And I went home the next day and that was non optimal. But I didn’t know it’s not optimal to not even 24 hours postpartum women on a flight home like really not great. However, I was the one who booked the tickets and I had to get home to my child. I’d been away from my child this whole time. So you know even though Dr. Harun didn’t love that I was going the next day. What are you going to do? Right? So we flew home. It was my 30th birthday. 

 

P: Oh my God

 

K: The next day was my 30th birthday. And I didn’t cancel my party because it was only very close family friends and I knew they’d want to hold me so I said yes, we’re going to go ahead with it. And my milk came in at my birthday party. And it was just like so freaking sad. But a couple of weeks later, my baby’s ashes came in the mail. Just like a little like a little handful pouch of ashes. And I hung on to them for a year and we spread them on her first birthday and never had a funeral. But we did go to the beach as a family and spread the ashes. 

 

P: That sounds healing I mean some kind of ritual around fairly tragic ends seems like a way forward. 

 

K: totally. Yeah. Ritual is really important and it’s powerful and it sticks to parts of us that logic and reason you just can’t. Yeah. So I learned to appreciate that I was a scientist. I was trained as a scientist. And so I have learned to appreciate ritual more and more through my grief experience and through the holding of other women and other parents in their baby loss and infertility journey.

 

P: Yeah, I think that the kind of autopilot aspect of it. That tells you these are the 10 things you’re going to do to get through this period and this set of things has come from people who have already experienced this and I think that seems really helpful.

 

K: Totally. Yeah, I found a support group and peer to peer support around something that is as rare and big and taboo as later abortion has been extremely important to my healing. More important than therapy. Peer to Peer Support has been more productive for me than therapy has been.

 

P: That is amazing. And getting a lot out of it. That is for some people, it may be hard to relate to just by definition because we’re things don’t happen often. And so there just aren’t that many people who experienced this. We had a rare issue in our pregnancy. And it is so unnerving to be on that edge where even the doctors don’t really have much for you and they can’t say what’s going to happen. And it’s just it’s a really tricky place to be. So I’m so grateful that you were able to kind of suss out something to do some way to manage it.

 

K: Totally, totally. And now I’m at Space folder, that group so it’s called the ending a wanted pregnancy. It’s just an online support. Group. You go to the website, ending unwanted pregnancy, I come to get into the Facebook group. And it’s, you know, basically it’s non optimal. But it’s a way to connect in with rare things as you know, like

Like if you have to. 

 

P: Yeah, 

 

K: look far and wide. Yeah. Sometimes doing something global like that is the way to go for rare support.

 

P: It seems like a particularly hard space because, yeah, there is so much emotional and political weight, and all these decisions and all these outcomes and those things are so black and white and not nuanced and not helpful. And this is kind of experiential, right? So if you have no experience with this, it’s very easy to say I would do this or I would do that and it just, just like birth, it feels different once you’ve been through it.

 

K; Completely. Like if you had asked me before any of this happened, would you ever have an abortion and like when you’re eight months pregnant? I would have been like, Oh, of course not. That’s ridiculous. Who does that? Right? Then it’s like, in a situation, and that’s the best I can do. Okay, but I do it. You know, so

 

P: also the truth of the better is the people who do that or people in your circumstance.

 

K: What I will say is that if an action seems extreme, and I would argue that getting an abortion when you’re eight months pregnant is a pretty extreme thing to do. 

 

P: Yeah, 

 

K: it is because the circumstances are extreme. And I never want to speak for everyone’s circumstances, because there are many different ways circumstances can be extreme. But I have profound trust that if someone’s doing something extreme, because her circumstances are extreme, yeah. I trust her to know that we’re not perfect. It’s not like everyone does the best all the time, but I really would trust a woman and her family, much more than I would trust the government. 

 

P: I totally agree. Oh, it sounds like your family did a lot around that pregnancy and birth and

 

K: yeah, we did. And I will say that my husband and I very much in stuff and together in our crisis. But in grief, there is no together in grief. 

 

P: Yeah, 

 

K: there’s no company in grief. Grief is incredibly lonely. So sometimes when I would want to ritualize he would need not to be there. What I ended up doing for my family is introducing two days of the year, when I bring them into my experience of virtualizing on is girl’s birthday. Baby’s birthday. The day actually birthed her from my body in June. And so what I do that day, I ask LC her sister and now we have another Sister Lucia. I asked them how would you like to recognize your sister’s birthday? Their kids, so it’s like, let’s eat cake. Let’s go out for ice cream. Let’s go to the beach. You know? That’s great. I just let them invite it. The other day of the year is Day of the dead. You make an altar. You put pictures and tell stories about the people in our family who have passed not just Laurel but definitely she’s prominently up there. And then we paint faces, you know we have a nice meal the beautiful holiday that I have made it into my family space just as a place that feels right for a family to remember together.

 

P: You know I like so much about both of these is that it is a way of keeping her in your life in a positive way. So it’s not I mean the whole thing was tragic. And that’s true and that happened. But there’s something to be celebrated about Laurel. And it’s so nice that you and your family have found a way to be with her in a in a positive way. That’s not painful.

 

K: totally…Yeah, and that’s the way I want it. I don’t want to like put the pain of this onto my daughter’s sometimes what I find is that with LC who was two her understanding of it grows with her every year. I think she remembers actually she may not remember everything but I think there’s part of her that remembers in her understanding gets a little more mature. It really shifts every single year whereas Lucia who was not born when this happened, she came later. Forgets she even ever had another sister which is fine. Yeah, that’s completely fine. So I want her to know about her family in a way that doesn’t like force her to be sad about it if she’s not because she’s  Yeah.

 

P: That’s amazing. Thank you so much for sharing your story. If there’s anything else you want to mention,

 

K: I would love to so what group is my volunteer work I also do advocacy and activism as as volunteer. But I have changed my careers to help women and families who have been through loss like this full time. I’m a love sex and relationship coach because what I find is that the fallout is all in matters of love, sex and relationship coach. So I’m a somatic coach and I work at night bloom coaching.com If anyone hears this and it’s like, this is a person I want to help walk with me through the through the grief or help me integrate my trauma I am not a therapist. I cannot diagnose or treat PTSD. But certainly I have found the tools I use to be extremely supportive of living more richly and fully after loss.

 

P: Sounds awesome. Thank you so much.

 

K: You’re very welcome.

 

P: Thanks again to Kate for sharing her story. Her experience is a powerful example of the nuances that color pregnancy–how complicated it can become in a short time span. Interviewing Kate and editing her story, I’ve listened to it a few times now and still have a hard time getting my head around all the desperately difficult things she and her husband had to do to deal with the sharp turn in the health of her pregnancy–the shocking medical news, the flight, the razor wire around the clinic, the procedure itself, and her milk coming in when she got home. That they did, in fact, manage it with the help of some extraordinary doctors and nurses is a testament to their strength.  According to the most recent figures from the CDC, in 2019 almost 93 percent of all abortions happen before 13 weeks. Less than 1 percent occur after 21 weeks.  I particularly appreciate that Kate shared her experience to give voice to what it looks like to be in this one percent, to show the heartbreaking choices some people have to make and how the burden of society’s judgment and legal obstacles make it even more difficult…I think her story dramatically illustrates the importance of allowing families to chose how to meet and manage very challenging circumstances.

 

Thank you for listening.

 

We’ll be back soon with another story of overcoming