Episode 71SN: Becoming a Mother without my Mother: Melissa’s story, Part I

Today’s guest is a clinical psychologist, whose mother passed away a few years before she had any direct experience of pregnancy. She encounters recurrent miscarriage, three in the first trimester, and then a pregnancy that progresses past the first trimester, only to be threatened with prematurity early in the third trimester and experience all of these challenging and transformative events are harder to manage without her mother. Now she’s focused on helping women who are going through or have gone through these major life events without their mothers. What follows is the first part of our conversation. Next Friday we’ll hear the rest.

To find Melissa’s sites:

Website: https://www.momswithoutamom.com/

https://www.instagram.com/momswithoutamom/

https://www.facebook.com/Dr.MelissaReilly

https://www.tiktok.com/@momswithoutamom

Enjoy Being a Mom Again Quick Guide:  https://www.momswithoutamom.com/enjoy-motherhood-again-guide

Care For Yourself While You Care For Your Baby Guide:  https://melissareillypsyd.lpages.co/bonding-with-baby-while-caring-for-yourself-opt-in

Schedule a complimentary coaching call: https://MelissaReillyPsyD-MomsWithoutAMom.as.me/free-coaching-call

How common is miscarriage

https://www.yalemedicine.org/conditions/recurrent-pregnancy-loss#:~:text=About%2015%20to%2020%20percent,still%20be%20attributed%20to%20chance.

https://www.acog.org/womens-health/faqs/repeated-miscarriages

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 is a clinical psychologist, whose mother passed away a few years before she had any direct experience of pregnancy. She encounters recurrent miscarriage, three in the first trimester, and then a pregnancy that progresses past the first trimester, only to be threatened with prematurity early in the third trimester and experience all of these challenging and transformative events are harder to manage without her mother. Now she’s focused on helping women who are going through or have gone through these major life events without their mothers. What follows is the first part of our conversation. Next Friday, we’ll hear the rest.

Let’s get to her inspiring story. 

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

 

Melissa: Absolutely. So my name is Melissa Riley, and I am from Lititz, Pennsylvania or that’s where I’m living is in Lititz, Pennsylvania and I’ve been here for 13 years.

 

P : Oh, wow, nice. Situate us in Pennsylvania. Where is that?

 

M : It’s the southern part. It’s in Lancaster County. So if you think about Amish country, yeah, that’s where I am and about an hour and a half west of Philadelphia.

 

P: Okay, excellent. 

 

So normally, I asked people about their experience with their family and whether it affected their ideas about what they wanted in the future. And I know from our brief conversation before we started recording that the answer to this is already going to be yes. But usually I cast it in terms of like, did you have siblings did you know you want to have kids but but why don’t you tell me a little bit about your story? 

 

M: Absolutely. So I was born into a family with a mom, dad and older sister and then 18 months later came my younger sister. And unfortunately my older sister was diagnosed with leukemia. And she, unfortunately in the 70s that was, you know, a terminal condition. And so my parents were needing to take care of her. Of course, unfortunately, she passed away at the age of seven, and I was only four. And then life went on and I was very close with my mom. She was a very strong woman larger than life, both physically and personality wise. Everybody knew her. And me and my younger sister were very close. And so I did always envision myself having a family and children. Well, things started to fall apart. I went to college and learned things that you know, my family wasn’t what I thought it was. And my mother and I had an estrangement that I know we would have worked through. But we had the estrangement about eight months prior.

 

P : Let me ask a quick question. Before you get to where you’re going here. Do you want to talk about my family wasn’t what I thought it was. Do you want to elaborate on that?

 

M : sure, sure… My mom, you know, both my parents, God bless them. Our whole life was impacted by the death of my sister after she died. We never talked about it ever. Death was something that I learned was so terrible. You couldn’t even talk about which of course isn’t true. But that was the underlying message that was passed along to me. And my parents didn’t mean to do that. It was just too painful for them. Right. So we never talked about it. And my mom became pretty depressed and my mother had her own history of some significant physical and emotional abuse herself. So she had a difficult time regulating her own emotions. So my parents corporate punishment, punishment was involved. You know, I became the overachiever. My little sister became the difficult one. Because, I mean, she had learning disabilities and ADHD and she was just talking to parents. And so things just weren’t as they see my mother was at, you know, a chain smoker, you know, overweight diabetic. Just didn’t take care of herself. She tried to but just, yeah, so became her own life shrink and just became, you’ll very inward, and he didn’t like what she did too bad. Then there were things that she did that I didn’t like, and it just, you know, in my mid 20s, we were butting heads about it. 

 

P: Didn’t you become a psychologist? 

 

M: Yes. So surprisingly, as the as the good kid and a family takes care of everybody else’s needs, and makes life easy for everybody else. Since life was very hard for us when we were young. Yes, I was very good at being empathic. I could sense anybody’s motion around me without anybody needing to say the words so it isn’t surprising that I became a clinical psychologist. And I went straight through college and graduate school was in the process of getting my doctorate when my mom died. But we had an estrangement eight months prior to her death. And so that complicated that factor even more,

 

P  and had you you hadn’t repaired that before. She died? It sounds like 

 

M: no,we hadn’t. It was right before I was graduating. And we had after eight months of not talking talk to twice before, in like the two weeks before she died. And I told her I had interviews for my residency. And so we had a cordial conversation, which was awesome. I mean, so I know that we would have repaired, you know, the injuries and, and all of that, but it just, we didn’t have the opportunity. She She died at 51

 

P : yeah that’s young. And that sounds pretty shocking for your family. 

 

M: Yes, it was. It was very shocking. Yeah, I needed to be the one to go tell my sister. You know, she my sister, unfortunately, had pretty significant mental illness. She was bipolar disorder. One. She was in and out of hospitals. Since the age of 16. Pretty much she had some medical conditions herself, and then all sorts of substance abuse, but she was clean and sober for the last year. of her life. And we didn’t know because of, you know, her psychiatric conditions, it masked some pulmonary problems. And so, anyway, I’ll get into that in a second. But so my dad didn’t feel strong enough to tell my sister so I was living in Pennsylvania. My sister was living in Connecticut. My dad was living in New York. So first I went, got dad, and then we went to Connecticut and I was the one that had to tell my sister that our mother had died.

 

P: Wow, 

 

M: it’s very difficult.

 

P: This this to the outside observer. Sounds like you’re doing a lot of mothering before being a mother.

 

M Oh, yes. It sounds like Yeah. Without a doubt, without a doubt.

 

P : And so this all sounds incredibly hard. And but but you walk away from this and say, I want a family of my own. Oh, my own kids.

 

M : Well, that’s not that’s gonna happen right away. Okay. Like I said, when I was young, I did and then later said, All this mental illness or this medical stuff, because my my younger sister died seven months after my mother did so. So the the man who was married to at the time was very adamant. is like, you can’t have kids we cannot continue this bloodline. Well, the the sad divorced him, but I really internalize that sense like, Oh, my goodness, my failing genetic gene pool. Is it awesome? Right? Lots of mental illness, lots of medical illness. So for the next number of years, I was like, Oh, I don’t know that I should have any children. So

 

P  can I ask one probably naive question. Yes. How strongly do genetics predict mental illness?

 

M: considerably. There’s a significant correlation. Certain certain disorders are more highly connected with Jin genetics than others bipolar one being one of them. Okay. Yeah. But anxiety, depression, they all have a genetic component. So it’s similar like heart disease. So if your parent has heart disease, that doesn’t mean you’re going to get heart disease,

 

P:  right

 

M: It just means that you’re more vulnerable to heart disease, and it will show up under certain circumstances.

 

P : Okay. All right. Fair. Okay. Keep going. Alright. So so the we are separated from the husband, he doesn’t seem supportive. And now we’re moving on. Okay,

 

M : we are moving on. My focus is on my career. I’m a clinical psychologist. You know, I taught you know, in graduate school to development, so I’m going along, you newly married, very happy and life goes on. And I realized I do want children and so we start trying and I’m in my mid 30s At this point, and I have my first miscarriage

 

P: let me let me back here for one second year. So two questions. Question number one, what do you think pregnancy is going to be like before you get pregnant?

 

M: I didn’t really well, let me not say that. I wanted to be one of those women who loved pregnancy. I was like, you know, I doesn’t matter if I’m uncomfortable. I’m gonna love this whole process. So I was one of those women who thought it was just a matter of deciding to love it wasn’t going to be crazy.

 

P  Okay so So that’s what we have stepping in and then is it easy to get pregnant? 

 

M: Yeah, it was easy to get pregnant. 

 

P: Good. Okay, good. One thing down. Now you said the first pregnancy ends in miscarriage?

 

M: Yes, yes. And honestly, that first the first pregnancy took me by surprise, because I, you know, had never gotten pregnant my entire life, despite not being very active and preventing it for many periods. So I was really surprised, but Okay, here we go. Wonderful. I’m excited. And then miscarried and  miscarried at about 10 weeks. So that was very devastating. And I felt very alone. And I’d known my mother had one miscarriage. When I didn’t really know many other women who had of course after my miscarriage, I found out about a lot of women who had because it’s not something that’s talked about a lot.

 

P: do now that I have a psychologist in front of me, I’m gonna ask do we do we think that’s our allergy to talking about death and hard things? Or do we think it’s something in particular like culturally, or do we think it’s something particular about the pregnancy process?

 

M: I think it’s a little bit of a both. Our culture is very averse to talking about death, but we’re also very uncomfortable with uncomfortable emotion, and uncomfortable emotion is normal and natural and isn’t something to avoid distress is, but it’s really important to recognize the difference between the two and unfortunately, in our culture, we do not do a good job of differentiating.

 

P  So can you lay up Can you lay out the difference since we’re talking about

 

M Absolutely. So uncomfortable is anything that again, we don’t like we don’t want it’s unpleasant, but it doesn’t create danger for us. It isn’t something that can be harmful to us. distress, on the other hand, triggers a response within our body that activates a system that tries to get us to get away from the situation that’s causing it. So that signals potential harm to our body or our well being. So things like boredom is uncomfortable, but it’s not distressing. Isolation, right if you are isolated, because you’ve been rejected. Now, that’s distressing, because being a loan for long periods of time, particularly if you’re young, can endanger your well being if I pinch your skin that’s going to hurt. That’s uncomfortable, right? But if I were to rip your skin off your hand, it creates a wound that’s distressing, something is wrong. Does that does that make sense?

 

P So this is totally helpful and and I’m wondering if miscarriage falls in a gray area where it is it right it’s it’s this is

 

M  miscarriage is definitely distressing without a demo. That sounds like talking about it. Right and talking about our motion is uncomfortable. 

 

P: Okay, okay, that’s fair

 

M : so the experience of death is very distressing, without a doubt, but the emotion around it, and that is especially when other people are communicating and may feel uncomfortable with somebody else’s grief. That’s that’s discomfort. Okay, we try to avoid that.

 

P  : Let me try to repeat back to you what I think he said to you can put me on the right place here. It sounds like distress is something that triggers your autonomic nervous system to put you in like fight or flight. And then and that shift potentially has like, sends chemical signals to your body and has all kinds of downstream repercussions. But uncomfortable does not induce any of those interior physical things and it’s just, it’s just something you don’t want to do

 

M Absolutely. However, our brain is so in tune with thinking right? So if we start defining these uncomfortable situations as not tolerable, you know, or dangerous, then the brain reacts as if it’s distress.

 

P  All right, this is tricky. Okay. Yeah. So I’m sorry to pull you away from your story, but no, you know, these things. So I want to ask you, well, I have someone who knows. So this sounds like a really 10 weeks is way too far into the first trimester. To not have it be a really sad event. And is your partner helpful or is anyone helpful or your doctor or

 

M  yes, you know, everybody did, you know all the things that that they could, you know, and, you know, my friends were very supportive and yeah, so I had people rallied around me and and I was very happy about that. I did, but that really longed for my mom,

 

P  for someone who had had the experience in your family who could talk to you about it in a way that other people couldn’t.

 

M Right. Exactly.

 

P  Well, that sounds hard.

 

M  It was it was. So we had decided that all right. Let’s keep going. My husband had a son from his previous marriage. And he was only three years old when we met so and we got married right away. So it was for at this point, we’re like, okay, I wanted the experience of having a biological child at this point. So try again, so so we try it again. And again, I had a miscarriage and now I started to really worry, like, okay, miscarriage is very common. No, it occurs in one in five pregnancies. All right, but oh, one person having two miscarriages. Not so common.

 

P Okay, so how common are multiple miscarriages? According to researchers at Yale Medical School, about 15 to 20% of pregnancies end in miscarriage. This is Melissa’s one five number. I’m betting it’s actually higher than that because it’s probably not always reported. But let’s use that number as a baseline. So according to these researchers at Yale, they say 2% of women have two consecutive miscarriages, which still could be due to chance and point 5% have three. Just to give a rough idea something on the order of 3.6 million people give birth each year.

 

M :So try it again. And I had a certain miscarriage. Now all the alarm bells are going off because that is rare.

 

P  are These all at like 10 weeks

 

M ish. Well, they were getting sooner and sooner. So 10 weeks, eight weeks, and then six weeks.

 

P  Okay, and is your doctor saying this sounds like recurrent miscarriage and that’s a different boat

 

  1. Started. Yes, the after the third miscarriage. She said okay, we’re gonna start doing some testing don’t get pregnant, and she took a pregnancy test and it was negative. We’re going to do a test during your next menstrual cycle, but it’s harmful to the potential embryo fetus, so it’s okay, we won’t Well, five days later, I’m pregnant.

 

I don’t know if the test you took was it? It was just I don’t know. What happened. But yes, I was already pregnant.

 

P Did you you found out because you got nauseous or you missed your period or like well,

 

M sensitive breasts. That was my telltale sign with all my pregnancies. All of a sudden, my breasts became really sensitive, very tender, and that’s not a symptom I never experienced during my menstrual cycle. So it was an unusual, so it’s like, Oh, something feels weird. So after being told not to get pregnant, I was like, take this pregnancy test. You know, and sure enough, it was it was positive. So we walk in, she’s like, Well, congratulations, which didn’t feel like congratulations. Because because I was like, I don’t know that I can do this again. 

 

P: Yeah. 

 

M: You know, and, but continue and, and I said, you know, I’ll never forget that first heartbeat that was normal and regular and healthy. It was like, Oh my gosh, you know, that hit 10 weeks. So that was this huge milestone, like Okay, can I get past that? You know, and then I did, and you know, it’s interesting Paulette, with all of my pregnancies. I’m a little different. I told all the people that were important to me, I never kept it silent. And my reasoning for for that is because I knew if I lost my child, I wouldn’t be support. 

 

P: Yeah. 

 

M: So I told everybody in my life that would be supportive and private person so it’s not like I, you know, tell people my personal business in general, but the people that I’m friends with and close with, I didn’t keep it to myself. I told them because I knew I would need them. If I had a loss again, and

 

P  this seems like the way we should all move forward, right? I can’t remember who told me not to tell anyone in the beginning. I feel like maybe it was my doctor. No, no shade intended. But you’re right that the more the course that would help you more the pregnant person in the moment is to have people who know who can help you if it doesn’t work out.

 

M  Right. Right. I’ve worked with so many women that say I don’t want to upset my family. But you’re not upsetting your family because it’s something that’s happening to you. 

 

P: Yeah. 

 

M: And if they’re upset, it’s normal. It’s okay that they’re upset.

 

P:  Yeah, this is upsetting. Yeah, 

 

M: exactly. So, so. So my fourth pregnancy comes along, and it was very nerve wracking. And here I am 37. And I knew I was high risk for a second trimester miscarriage because I had surgery on my cervix earlier in life. So I was already aware of some some high level risks for an advocate that the term you know, with a cervix just opens up spontaneously. So because of my previous my three miscarriages, my advanced age, and I had a thyroid disorder and my previous history of cervical surgery, I was being followed by fetal maternal medicine, which was wonderful, you know, the more medical supports I have around me, the better.

 

P I agree, I want to wrap you in bubble wrap. Let’s keep going. These next few months I want to 

 

M: Yeah,so here Yeah, you know, all excited and at re 26 week appointments. Just routine appointment doing the ultrasound. They find that I’m dilating. So, the nurse brings in the doctor and it’s like, Okay, we’re gonna do a stress test or you know, we’re they measure your contractions. Oh, yeah, you’re contracting and their regular you’re in labor. I’ll never forget it. I just said, What do you mean I’m in labor? 26 weeks. I know the statistics. So

 

P and it sounds like you can’t feel it really

 

M  it was uncomfortable, but I was always uncomfortable. 

 

P: yeah, yeah, Yeah. 

 

M: The week prior. I went into the ER because I had pretty severe pain in my back. And they did. They did a a kidney ultrasound. They never did a vaginal ultrasound.. I was I have no doubt I was in labor earlier and it just wasn’t caught. Okay. So I was being pulled over to the ER because it was a beast hospital within a baby’s hospital. The office was attached. And that’s when they started. I got a whole lot of shots to stop labor. I got steroids and was told okay, you need we need to do a series of two steroid shots in case you deliver for this baby we need to get the baby’s lungs here’s what we need to get his lungs developed and delivering it this age only gives us a 50/50 chance of survival. And again, I’m in this whirlwind like what you know, I my four year old, you know, son, you know, steps on my husband at that appointment. We’re all just looking at you like what is going on? So they admit me, and it felt like counting hours at that point. Like I knew there needed to be 12 hours between the two shots at the rate of survival went up if I had gotten a second shot, so literally it felt like counting hours at that point

 

P  and they’re keeping you in the hospital because they can’t turn the lever off. So the shots aren’t working to like the shots which I assume are hormones or something.

 

M I forget the name of them. I got to see the the two that were critical with the two steroid shots. Each case I gave 

 

P: Yeah. Yeah. 

 

M: And then there was a two other shots. They started with one to see that work because that would be less disruptive. And it didn’t and so then they gave me the second one which was pretty disruptive to my system and everything but But thankfully, it worked the labor stopped progressing. 

 

P: Okay, good. 

 

M: So, after a week in the hospital, and it was no longer progressing. They said okay, we will discharge you on bed rest. And so I needed to see my OB every week and that you know, maternal medicine. Well, the contractions never stopped. So I continue having contractions, which was not a big deal. What we needed to watch was if the contractions became more productive, okay, and so, we had to monitor the level of dilation. And level of effacement of the cervix. And we can only do that by going in Well, I had multiple times at that point going back into the hospital getting more series of shots to stop the pregnancy because it’s it would you know, every now and then an uptick and become more active, which was terrifying. I mean, it was terrifying. But there were all these milestones, right? Okay. So 28 weeks Alright, let’s get let’s get to you know, first it was 28 weeks then, you know, like every week was like, Okay, this UPS our chance of survival. This ups chance of survival. Because at that first appointment, given the statistics of how I was a phased in dilated they gave me a 10% likelihood of carrying to term. So I had that in my head. Okay, I have to we have to make sure that everything is taken care of. So here I am on complete bed rest. We have my stepson who lives with us 50% of the time. My husband was working full time. I had to stop working, obviously. And I only moved into this town that we lived in a year prior when we got married. I didn’t know anybody I’m an introvert. So making friends was pretty hard. I was alone. I was alone.

 

P  Yeah, this sounds this this sounds like it literally are piling one thing on top of another on top of another in terms of how difficult this is. Also I’m imagining they’re saying we’re gonna check your cervix once a week and you’re like, okay, but really, how about every day? How about every day like, wait seven days between each check and keep fingers crossed and

 

M  Well, thankfully, at the OB, you know, one time of the week and then the fetal maternal medicine at the other time we did have to appointment now it was only you know, it was only the fetal maternal medicine that did the the ultrasounds and all of that but the OB was checking the heart rate and my you know, all the typical things. 

 

P; Okay, good. Okay, good. 

 

M: So I had to find rides me was just, it was, it was really tough. And again, this was a time when I really wished I had sisters with a mother and

 

P: I’m going to stop my conversation with Melissa here. Mother Daughter relationships can and often are many things as a modern day testament to that fact. When I went to the internet looking for articles on mother daughter relationships, we will finish my sentence with the top searches, which included the words difficult, hard and complex. for most of us. Our mother is our very first attachment of the world. And the loss of that whether it’s to death or estrangement can be profound. I appreciate Melissa sharing her story. And next week, she will also share some insights into how she managed all the challenges she faced without her brother. Thanks for listening. We’ll be back next week with the rest of Melissa’s. story



 

 

Episode 69SN: One Woman’s Experience with Recurrent Miscarriage: Eileen’s story, Part II

Today we hear the second half of Eileen’s story about her experience with pregnancy. Last week we heard about some of the challenges associated with her miscarriages. But when we left Eileen, she was about to deliver her first baby, having christened the hospital elevator when her water broke on the way up to a birthing room. we’ll pick up her story on the way to the hospital.

You can hear Naomi’s story here

alpha fetoprotein

https://www.stanfordchildrens.org/en/topic/default?id=alpha-fetoprotein-afp-90-P02426

https://americanpregnancy.org/prenatal-testing/alpha-fetoprotein-test/

Audio transcipt

Paulette: Hi, welcome to war stories from the womb. I’m your host, Paulette Kamenecka. I’m a writer and an economist and a mother of two girls. Today we hear the second half of Eileen story about her experience with pregnancy. Last week we heard about some of the challenges associated with her miscarriages. But when we left Eileen, she’s about to deliver her first baby, having just christened to the hospital elevator, when her water broke on the way up to a birthing Room. We’ll pick up her story on the way to the hospital.

Eileen: So I’m in the backseat of the car and on the other floors and I’m just like, moaning you know, and just like it was really kind of fun, you know? Like it was just like really letting it all hang out. You know,

P: wait, how long a drive is, this?

E:  is are we in for like 20 minutes? No one is it it’s it’s what time is is like 10 or 11 at night in the city. So what was it it was Thanksgiving night so there was like no traffic. So I’m more than we’re going to Lakeshore drive my husband just like flooring it, you know? And then we get to Northwestern and I’m just like, You know what I loved about it was like NUMA to see I was just like, I don’t care, moaning I don’t care, like whatever. So we get to triage and they’re like, You’re nine centimeters.

P: Oh my god. Oh my God.

E: So They put me on the gurney or whatever. We wheel into the elevator.

P: Wait a second only ask the question here. Are you Are you sensing that the waves are getting higher or whatever the whatever the image is,

E: I don’t know what the heck, you know what I mean? Like I don’t know what I was. I was just like, I was like very mammalian. Let’s just say I was very, I was totally my animal body. So then they really into the elevator and my water breaks

and that was kind of like take that!  Myt husband was like: it was like it was a hazmat situation. I was like I don’t care, you know. So like we put me into labor and delivery. And now I’m 10 centimeters. Oh, I saw my shoes on and you know, I’m just like, yeah, the doctor comes in. I mean, she’s like, has a sandwich in her hand. She’s like, Oh my god. They called her down from the  cafeteria and I’m wearing these like silver gym shoes and leg warmers. And she just like, can

we take your shoes off? And I like, I don’t care, you know, like, well, I believe he wanted to deliver cowboy boots last week. So I got

P: that’s so funny.

E: So then I’m pushing, you know, and I’m thinking like, I’m pushing and pushing. And then my jeweler turned to me she goes, I hate to tell you. But you have to push harder. And I was like, oh, okay, you know, because it’s weird. You know, you’re like you think you’re pushing but you’re again, like you’re I was holding back to get to kind of a comfort zone. 

P: Yeah. 

E: So I’ve never given birth before. So what do I know about how hard to push? So then I pushed and pushed in? Yeah, I think I was in there about an hour. I don’t know. It’s all that part’s kind of a blur. But

P: God, talk about waiting at home until the last minute, because well done. That’s extremely German engineering. That’s hard to top that. So when the baby is born, do you know are you hoping they don’t cut the cord and they put the baby on your chest? Or do you have any?

E: they did cut the cord? The cord and then yes, she came right on my chest and we didn’t know the sex either. So we really were expecting a boy and it was a girl. I mean, who cares? Right because I have a baby finally. 

P: Yeah, 

E: like a frickin miracle. Like I finally I get one finally you know so and then she nursed straightaway and all that went pretty easily for me too. And kind of like I had like the hell of getting pregnant and then like, like the reward of a good birth and easy pregnancy and

all that. So 

P: yeah. That is amazing. And it sounds like maybe the fourth trimester was not too trying, because you would have you’d seen it before you had experience. She could breastfeed pretty

well. 

E: You know, my mother said to me, nothing can prepare you for the first six weeks. And I think that was a really wonderful thing to say. And I always say to new moms too, because there does come this shift after six weeks. 

P: Yeah, 

E: you know, absolutely. Like, I don’t think I was more prepared than anybody else other than knowing like this entity will end but

P: but also that freeze gives you some sense that words can’t capture the difficulty or the hardship or the pain or the lack of sleep or the combination of all those things what that will feel like

E: Right. I mean, and I think that was really like liberating. You know, my mom just say like, nothing can prepare you so like, whatever there’s it’s not your fault, or there’s nothing you can do. Yeah, you can set up the crib and you can have the changing table and all of that stuff. You can prepare that way but emotionally and mentally can’t be prepared for that how absorbing and how exhausting and 24/7 It is.

P: Yeah, yeah. Well, good. So that is an amazing story of triumph. The girls are a couple years apart. It sounds like

E: oh, they’re three years apart. Yeah. So then my second daughter, yeah, again, it was never never trying. Right. It was like we never tried we just had sex and kind of let it go. So yeah, that was a huge surprise. I was 44 

P: Yeah. So you were you imagining to have another one or you were just Well, 

E: I was just it was funny because like to my closest friends in the neighborhood. Had we all had kids the same year or first were the same age. And then they were both pregnant. You know, 

P: wow. 

E: Yeah, with their second third like that one’s six years younger was 10 years younger. So they were younger, you know, than I am everybody. So everybody’s younger. With kids this age, but so I just was starting to kind of feel sorry for myself. Like I knew was I felt like it was too much to ask for but I did you know, want a second, of course just for her to have a sibling. But again, it was like a huge surprise a big surprise that I got pregnant with Alice and you know, happy surprise, but that pregnancy was not as easy.

P: So that one you find out because you miss your period. And that’s happy news  when you get the result.

E: Yeah, yeah. Surprising. 

P: And then what happens? 

E: So my first trimester is fine, kind of like the first one not a lot of morning sickness. And so we’re so in the midst of all and I’m thinking about I was listening to Naomi’s your Interview with Neil before. And so she went through that whole situation where her son was born and then her mother father died. Yeah.

P: Okay, so here Eileen is referencing Naomi’s story. That’s episode 51. And she’s talking about how her father died not long after the birth of her son, and its dramatic impact on her.

E: So my husband and I had been through that so like when this like first was born. In November of 06 and then in 08, ah, my mother in law died. So we spent like the first year of Lucille is like my husband’s French, like going back and forth to France, and he’s an only child. So so she died in 08 and then right after that. My father died. My father got sick and died in 09. Yeah, so it was like three months after my father passed away, I found out I was pregnant. So that was kind of cool. You know, like sad. too, because like in the process, we lost two of our 

P: Yeah. 

E: grandparents. So. So we had to go back to France that summer, because my husband was settling his mother’s state. So okay, so you know, I You heard how I had a miscarriage in Ireland. So when I got pregnant with my first, I’m not traveling anywhere when I’m pregnant. Totally staying put. I’m not going anyplace.

P: To give a little context to Eileen is talking about here her miscarriage in Ireland. I’m going to read another short section from her piece on fertility that she published in Toast at this point, she’s 33. And in her first trimester, she’s in Ireland, and her husband is back in the States. She miscarries in the shared bathroom of her b&b In the very early morning. There’s a lot of blood she’s just alerted her parents to the drama unfolding in the bathroom, she writes:  

I heard the paramedic stomp up the stairs. They lifted me off the floor. They swaddled me in maxi pads stacked one on top of the other shiniest move. I had an iPhone that I could unapologetically bleed into this Barbie sized mattress. As they helped me down the stairs the owner of the b&b lent me like gave me a cracker. The paramedics strapped on a gurney and bullied me into the ambulance. My mother jumped in the doors slammed and I watched my father grim faced as we pulled away in that rain speckled square window. I watched him shake his head light sharp in the lenses of his glasses. He ran a hand through his strict with grey black hair was still in his pajamas, flannel pants, leather jacket, overweight T. Then he grew smaller and smaller as the siren began as odd wailing. 

I was so relieved to be lying flat. And yet as I watched those green Irish Hills roll by, I felt again like a failure. My great grandmother in Bandon had birthed 10 children. My grandmother emigrated to Chicago and had 10 children. My mother had nine children, it seemed like to not manage one. The Moody gray clouds, the rocky walls, the abandoned castles, the herds of cows grazing and the lurid grass I watched all of it to the oblong window, I felt an elemental kinship with the landscape. The souls of the famine dead haunting the ditches, the fertile Irish landscape that was keenly linked to starvation, to death, and to ludicrously high birth rates. 

We’ll get back to the second pregnancy now you can find a link to this piece in the show notes.

E: Because Alice was such a surprise we had booked a trip to France for July. Okay, way before I even knew I was pregnant. 

P: Yeah. 

E: So we went to France. worked a lot on getting this state settled. I have a two year old and I’m pregnant. And I’m 44. So toward the end of the trip, all of a sudden, I could not urinate. I couldn’t I wake up the morning and I wouldn’t have to go pee and I was like, well, that’s kind of weird. And then it got worse and worse. And then I couldn’t pee at all. And so like we’re leaving for we’re leaving France and okay so my mother in law had a house on this little island in France. Okay, so this little island off the coast of Brittany is quite idyllic is blah, blah, blah, but healthcare wise, it’s kind of a nightmare. 

P: Yeah. 

E: So we go see this doctor. And this kind of, you know, he’s like, my husband’s like, my wife is in pain. You know, she has my stomach is starting to get big because my bladders full. I’m thinking I’m like, Oh, I’m really gonna show him you know, it’s actually not my uterus is my bladder. And every time like driving the car, everything hurts like nothing hurts like what this hurts. So the doctor is like, oh, mais bien sur, you know, she’s in pain or like, and he pulls out this PDR physicians desk reference from like, at that point, 2009 This is like the 1999 version and he prescribes, so yeah, describes this antibiotic for me. We run it we get it filled in, in France. It’s like a powder that you put in water. 

P; Okay. 

E: Well, that thing made me so sick and leave the next day and I was like, vomiting the whole way home. So I’m not pregnant. I got a two year old to get on. A boat and to get on three trains and then I fly back to Chicago. And I’m sick, and I’m puking and I can’t pee. Release me can pee this may be TMI is when I puke. So anyway, we get back to Chicago and I’m scheduled for my ultrasound. So you know I have to full bladder. 

P: Yeah. yeah, Done. 

E: They’re like your bladder is too full. We can’t see your uterus at all. So they should have like, sent me to the ER and catheterized me right. But they did it another day or two went on. I can like I can’t even tell you like seriously I’d rather go through labor than that pain. So finally we go to er they catheterized me dream you know an ungodly amount for my bladder and then and then we can figure it out. So so like the ER Doc’s are med students and they’re kind of like we think maybe, you know, you’re you’ve got a tipped uterus and that’s blocking your urethra or it’s this or that, you know, and, and then like three days later, I’m back in the ER because I still wasn’t getting another one, you know, so at that point, they put me on a Foley and I’m catherized for now this is what’s weird is unlike safely into my second trimester trimester, but I like you know, I’ve got a fully strapped on my leg. 

P: Yeah, 

E: actually, I’d rather have that than the pain so that goes on for a couple of weeks. But then they’re like can only have a fully in for so long. It’s because of the risk of infection and Eileen, you have to learn to catherize yourself. 

P: Are you kidding? 

E: So my husband and I go to a urologist in here, so learn how to do it. And we’re both you know, it’s just it’s just like a nightmare like it is the hardest thing for a woman to do to herself. Or, you know, if you’re a man, it’s not so hard, but for women, it’s very difficult. So I kind of give up on this whole thing. And so my sister, my older sister, who’s a nurse, we just cannot figure this out. We cannot figure out how to get there. And she said, well just start measuring your pee. Just Just see how much comes out. And if a little bit more comes out every time. You know, that’s a good sign. So I just started measuring it, measuring it measuring and eventually I’m just like back to normal. I don’t know why. They don’t know why. Nobody knows what happened. But I so I go back to the neurologists, like two weeks later and they’re like, how’s it catherizeing going? Like, I kind of stopped you know, and I don’t know if this is another example of that mind over matter kind of thing where I can’t go through this process like or maybe like the uterus

grew. 

P: Yeah. And shifted. Yeah, yeah.

E: In the urethra, whatever. The plumbing. You know, worked itself out. So but Oh, and also what was tough about that pregnancy was you know, I went in for all the alpha feta protein tests and everything and I got irregular results. And so then you wait what to 20 to 22 weeks before they can actually see if there’s anything wrong. 

P: Yeah. 

E: And so my doctor was like, Look, you’re because of your age, your results are skewing against you so don’t take it too hard. You know, just see what happens. So we go for the ultrasound. And my daughter, Allison, she’s just all curled up. She will not and the whole thing that they’re checking for at that point is her chamber formation. And you can see that all four chambers of the harder developing properly, and if they aren’t, then it’s I think they were thinking it was Trisomy 18. 

P: Okay. 

E: And so she just would not show her heart. She was just like this in the in the ultrasound technicians taking longer and longer and longer and I’m getting more and more freaked out, and we’re waiting and they can’t get a read. And so, you know, imagine, you know how the heart your pumping heart gets registered on the ultrasound mines like thump, thump, thump, right? I was just like, oh God, and so then they brought in. Finally the doctor came in. And he was just super chill, very relaxed, kind of nerdy guy and he just was like, she just like it was like a magic wand. Like he just did this thing with the ultrasound and then Alice just opened up and showed her heart and it looks perfect

P: That’s exciting.

E: So that was great, you know, and then after that, it was fine. The pregnancy was fine. But it was it was a rough second trimester. 

E: Yeah, that sounds rough. Good Lord. That does sound like a movie script. You wouldn’t believe right? If you read it, you’d be like, come on. The French doctor. Come on. 

E: The French doctor mais bien sur…, you know, he’s so arrogant. Oh my god. And then you know, this this hot. I mean, it was like I never wanted to like I just wanted to get to a major medical facility. Yeah, yeah, I was so terrified. Well, once we made it to Paris, and I called my doctor at Northwestern, I said, I’m scared I can’t keep any food down. You know, I couldn’t eat anything. And I’m really afraid for the baby. And the doctor was so sweet. She’s just like babies getting exactly what she needs. She’s taken that all from you. 

P: yeah, yeah, Yeah, 

E: it will be the baby will be fine. You’re the one that’s suffering, but the babies know how to get what they need. Out of the mother. So and then I said, Well, how am I gonna get on this eight hour flight without throwing up and she said tiny slips of paper without dehydrating. 

P: yeah, yeah

E: And she’s a tiny sips of water every 10 minutes. And that’s what I did. I could keep that much down, you know, and I just kept doing tiny sips of water and that’s, that’s up the nausea and that can be hydrate, you know, so just like those little, those little nuggets of advice are so precious, you know, like, really helps. So yeah, so the pregnancy got better. 

P: And what was the birth redo of the first one?

E: Even faster. 

P: Wow. 

E: Yeah. So what was weird about Ellis is Selena was born my first was born on her due date. So you know, you think your second birth is gonna be your second is going to be exactly like the first well this reconciling in your mind that like, it’s not. So I my water broke at night, a week before Alex was due and I was like, well, that is so weird. That’s not how it works usually explode in the elevator, you know? So, and again, that was mostly at 1030. At night. I call my Doula we leave her for a few hours labor totally stops. We go about our day. My sister came in took my oldest overnight, you know, because we thought it was so that was like 10 on a Saturday night and then Alice was born at 10 on a Sunday night. It was Super Bowl Sunday. So again, nothing had walked around, spent the day kind of walking, eating napping, and then labor kicked in and around eight at night. And so same time, we might actually know that you’re saying that. And so my Doula had left. She had come and  she had left. And then it was like eight and I said and of course because I’m thinking this is gonna be exactly the same as my first baby. So I called her and I said, and she was she had no car she was she writes bike everywhere. So she was in she was half hour away. And I said, don’t rush. It’s fine. It’s early, you know? Like, don’t don’t, don’t worry about it. And so then the contractions start coming. So my husband starts giving me massages between the contractions, right? This is also like, really a true story. And so he has this drum. So he started kind of drumbing for me. And it was like, it was like the drum and the contraction. All of a sudden, I just had this huge contraction, and I was like, Oh my God, right? Like I’m about to have this baby like, I was like, I’m gonna have a baby. So we were like, I can, I can feel this thing coming, you know? And so, and I have, like, if I honestly call it I was like, if I squat and make is so, so we call the doula and we’re like, Oh, I think she’s actually coming. So she’s like, I’ll meet you at the hospital. Right? So, again, we jump in the car. And we’re going we’re going down Wilson Avenue, my husband is speeding, and I’m like, now at this point, I’m crossing my legs. together to keep from giving birth like I’m holding this baby in we’re like going down Wilson and he’s he’s driving super fast and super bowl sunday is at night not too many people on the road. 

P: Yeah. 

E: And this he started speeding up and then someone starts drag racing with us and we’re like, inching down. It’s a two lanes and we’re not there to guard side by side. Finally, I look at them and I go, I’m about to have a baby, right. Oh, you can pass. So then he’s doing like 65 and a 45. We pull up the like to the to the hospital in the wrong the wrong way on a one way street. I go in there. And they’re like triage and I’m like, um, um…do like you need to go the bathroom. I’m gonna have this baby in the toilet. And sure enough, some find that get in there. And I’m 10 centimeters. 

P: wow

E: I’m 10 centimeters in the oven. This another doctor comes in. She goes, Well, I mean, this is how you’re gonna do it. This is how you got to do it, you know? So then Alice was born pretty quickly. And interestingly, her birth story was she she had her little hand on her cheek put her umbilical cord was wrapped around her neck and her wrist. And so thankfully, because of her fist on her cheek, she didn’t get strangled by the umbilical cord. So that was another piece of luck, right? 

P: Yes. 

E: And all these things.

P: I mean, there’s a lot of lucky things in that both of your kids have picked like national holidays so that you don’t have to like you don’t have to mess with the traffic getting to the hospital.

E: I mean, I probably could have had a home birth with the second you know, but I was too nervous to do that. I’d had some friends who’d had some pretty rough experiences with home births. And given my own history, I just wonder is that 

P: so that’s amazing. Yeah, so that’s easy, too. And that fourth trimester was probably a little easier because you knew what to expect.

E: Yeah, especially the birds do like I totally knew what to expect. So yeah, so that was good. You know, it all worked out. But it was a long journey, right.

P: It was a long journey. And it sounds like you’re did you write the essay and toast before you had the kids or where does that fall in line? 

E: So after? Yeah, so like I wrote it? I don’t know. I think it was published in 2015 or 16 and Alice’s point in 2010. So

P: so you had more time to process that from a different perspective.

E: Right. Yeah, exactly. Yeah. Yeah. It’s weird because I feel like birth stories and fertility stories and pregnancy stories. You know, there’s so many different iterations of how it goes you know, there’s you got those women who get pregnant right away. Super easy, and they’re like, it’s like, their lives change so fast. 

P: Yeah. Yeah. 

E: You know, they were the kinds of people that I envy back in the day, you know, but at the same time, it’s like, they didn’t really like there. They didn’t have time to, you know, really get how precious it is, in a sense, like, what a privilege. 

P: Yeah,

E:  motherhood is.

P: Yeah, if it comes easily, right, that lesson is not as obvious.

E: Yeah, and I think I think it’s you know, I think once you go through all everything that I went through, then like, even when it’s really tough being a mother, you’re I was always so like, oh my god, I can’t believe I get to be one. 

P: Yeah, yeah. Yeah, that totally makes sense. I have a similar I have a similar awe about it. And I also have an awe of about the whole process. Just because it’s so many things have to fall in place. It’s just the right time and there’s got to be luck. There’s got to be all kinds of things, none of which you control everything which you imagine you control. Right. There’s just a lot. A lot going on that if you are in a position where things don’t come easily, you can see all those thresholds.

E: And the weird thing about pregnancy and motherhood in miscarriage is you hear it all the time. It’s it’s such a common thing, right? We all have these experiences in our lives like you, you know, you went to graduate school, the University of Chicago like that is not common, right. But becoming a mother’s is really common. Like so many people go through that. And yet it’s so extraordinary. 

P: Yeah, yeah. Yeah, I do think I was terrified. of birth. And I kept telling myself, you know, how many hundreds of millions of people have done this, right? This is a doable thing. But in your own, on your own journey in your own life in your own experience. It just it takes on something different, right. It is a totally different animal.

E: Right, right. And and, you know, that’s why like, there were a lot of things for me that I really, when it came to birth, you know, I was reading a lot about Ina May Garter, you know, like, it’s like, this is a natural process that women have been doing forever and I really did not want to turn it over. You know, the power of that over in a way but we haven’t jokes to my family because like certain of us have very high thresholds for pain and other people in my family has super low press thresholds. I happen to be a high threshold person. So like, I really, yeah, yeah, I mean, like, I know that I could impose because my experience of miscarriage too, I was just like, okay, I can I can deal with this pain. I can manage this pain, but I know that that’s not the same for every woman, right? I mean, like, many women are just like, give me that epidural, you know, bring on the drugs. But yeah,

I don’t blame that. You know. It’s fine. Like, I don’t want to be like, you have to do it my way, kind of mother, because that’s a trap that women get into against each other, right? Yeah, the kids are how you get pregnant or how you give birth or is it a season like all of those judgment things, and ranking of what’s most superior is really toxic. 

P: Yeah, I totally agree. In fact, I saw some maybe it was a New York Times headline this morning about the baby food shortage which you know, my husband and I discussed like, oh my god, it’s so scary. What would you do a week I breastfeed at all so we that definitely would have been us. And you know, the New York Times article said something like people are telling them to just breastfeed

E:  it’s too late. 

P: Like you have no people can’t force feed like it just there’s a million things that go into that. Right. So to suggest just breastfeed is doesn’t make any sense, right? There’s no I mean, in

a lot of women, like my niece has had a six month old Well, she can’t suddenly start breastfeeding months in late, you know, like, so that I know it’s so frightening for those women I feel really bad about that must be

so scary. 

E: Yeah, is I’m feeling scared. And I my youngest ones 18. So I can only imagine. I can only imagine what they’re going through. I’m stressed on their behalf. 

P: Well, thank you so much for coming and sharing your story. It’s an amazing story and I will link to your essay. Thank you toast and if there’s anything else you want to join to them and your website or anything else.

E: I do have a website, eileenfavorite.com I mean favorite.com It’s got other content. I have a novel called the heroines that came out when I was actually so when I was pregnant with my first which is kind of cool. Wow. And yes, so I’m a professor and there’s all kinds of things on that website. They’re not necessarily about parenting, but other creative things I do.

P: That sounds awesome. All right. Well, I’ll link that. 

E: Thank you. Thanks for

giving me the opportunity to speak with you. It was really fun time.

P: Thanks again to Eileen for sharing her story. I think reflecting on everything that’s happened over the course of the 10 years. She and her partner were interested and are ultimately not directly interested in having kids. It’s a very unique personal set of experiences. And as she said last week, each person processes miscarriage differently. And we as a culture should make space for all these differences and hold them gently. Thanks for listening. We’ll be back next week with another inspiring story.

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

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

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

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

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

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

Audio Transcript

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

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

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

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

Let’s get to this inspiring story…

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

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

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

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

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

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

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

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

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

E: No. 

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

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

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

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

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

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

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

E: Yeah, 

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

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

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

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

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

Dr. Kutteh: Thank you. 

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

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

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

  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

P: yeah. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

P: What were you imagining for the birth?

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

P: That’s awesome.

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

P: Yeah, yeah. 

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

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

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

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

P: Oh my god. Oh my god. 

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

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

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

thanks for listening

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

 

Episode 64SN: Giving Birth to Motherhood: Amie and Katie

Today we hear from two women, one’s an author and generally in the book world and the other is an author, grief counsel and  therapist. Individually, these women encountered challenges with their own pregnancies. They’ve come together to write a book that helps women to process the events of their pregnancies and birth by writing about it.

To see more of Amie’s work, click here

To see more of Katie’s work, click here

To find their book, Giving Birth to Motherhood, click here

HELLP syndrome

https://my.clevelandclinic.org/health/diseases/21637-hellp-syndrome

https://www.preeclampsia.org/hellp-syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015173/#:~:text=The%20HELLP%20(haemolysis%2C%20elevated%20liver,opposed%20to%20pre%2Declampsia%20alone.

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 we hear from two women, one’s an author and generally in the book world and the other is an author, grief counsel and  therapist. Individually, these women encountered challenges with their own pregnancies. They’ve come together to write a book that helps women to process the events of their pregnancies and birth by writing about it. Let’s get to their story

So thank you both for coming on the show. Why don’t you introduce yourselves and tell us where you are and a little about your background.

Amie: Yes, so I’m Amie McCracken. I’m originally from Colorado, but I live in Munich, Germany now hence having met Katie. She’s also here. And I’m an editor and author, a book designer. I worked in kind of the book world. But when I had my son, it brought up a whole different topic that I wanted to write about, about birth and all that stuff. So that was how I ended up writing a book on that topic.

Katie: Yeah. And I’m Katie Rossler. I’m a transformative grief guide and licensed counselor and author as well. And this is my second book that we’re coming out with. And I have three kids. The first one was a quite traumatic birth experience and so when Amy and I first met, somewhere along the lines, we started to talk a little bit about birth story somehow it really did come up like quite naturally and we shared our stories and from that, we knew there was a partnership later on. We’ve become great friends, but we knew there was a partnership later on it and writing something to help others.

P: And Katie, what puts you in Germany?

K: I married a man with an accent. You know, they hook you and pull you in and you’re like, Oh, sure. Sounds great. But I grew up in a military family. So moving around, was like, Yeah, I can live in Europe. I had lived here before. Yeah, but now it’s six years here. And I’m like, Oh, we’re staying over here, which I do truly love. I mean, I’ve talked about this. It’s, it’s very hard once you really fall in love with the place and you get used to it to go back. I don’t know.

P: So I’m guessing you’re both fluent. In German.

K: Amie is me, not so much.

P: So you can you can live there easily with mostly English.

K: Yeah, we’re in a major city, so it helps. Awesome. Great. Yeah.

P: So why don’t we start talking about your book project that you get together on birth? Stories. So what’s the name of the book?

A; It’s, let me get the full title. So that I have that. It’s giving birth to motherhood, embrace being a mom through the powerful healing process of writing your birth story.

P: Cool. So we’re all three of us very much aligned here. So would you like to talk about specifically what brought you to this project? And then we’re what the project does for other people? Sure,

A: definitely. Definitely. So initially, I when I had my son, I thought everything went fine. I mean, it didn’t go fine. It was problematic. It was traumatic. It was difficult. But he was healthy. I was healthy. So I was like, everything’s fine. Everybody told me that everybody was like, everything’s fine. But I sat down when he was five months old to write down what happened just for my own memory. And through writing that I started to discover what actually went wrong and that I was actually angry about what went wrong, and that I was very frustrated by the control that I lost.

P: So I asked, let’s go slowly here. So the issue here is the birth itself, the pregnancy is fine

A: sort of so I’m a type one diabetic, so the pregnancy was high risk. Anyways, that’s how I ended up in kind of a more problematic delivery.

P: What is it what does it mean to be a type one diabetic and pregnant? Why is that immediately high risk,

A:  for the same reasons that gestational diabetes has high risk tendencies, basically, the baby will grow larger because my body has harder has a harder time processing insulin.

P: Even if you’re even if you’re like on medication, and it’s controlled.

A: Yep. Yep. But I have to be much, much more controlled during the pregnancy in order for the baby to not grow too big. And so what ended up happening is I was induced at 37 weeks because he was too big. So yeah. And it like that, that brings up its own complications, because then vaginal births are more difficult because the baby’s bigger and all kinds of things but also, when he comes out if my blood sugar was not controlled during delivery, he could have a low blood sugar which ended up happening so he had to go to the NICU and be taken care of right away. Yeah, so it it just presents some problems, which I knew all of that. ahead of time. I was aware of it. I was ready for it. I was prepped for it, which was actually quite different. For Katie’s story. She was not prepped for a traumatic birth. She was prepped for everything to be normal. But for me, it took writing my birth story out to realize that I was angry about what had happened that I was not satisfied with how it went down.

P: What would you have changed?

A: I don’t know that I could have changed anything. And that’s unfortunate about how the system works is that what ended up happening is in the middle of well, near the end of my delivery when they decided to go for a C section because I wasn’t progressing. They took over the control of my blood sugars that I had been controlling them and they took that over they put me on an insulin drip instead of my insulin pump which I had control over. And my blood sugar went up from there, and they didn’t quite deal with it. And so then when he came out, his body produced too much insulin that made his blood sugar low, and I could have prevented that. But it felt like the system didn’t allow me to prevent it.

P: Did they take away your control because they thought you’d be incapacitated by birth or?

A: Yeah, so essentially, when they were prepping for the C section, they were like, you can’t possibly take care of this while you’re on the operating table. So we have to now take care of this. They would do that also for a diabetic who went into a vaginal birth when you get kind of through transition they take over because you just can’t pay attention anymore. So on the one hand, it’s a good thing. I mean, they are they are taking care of it, but I feel they didn’t pay enough attention, but then they also didn’t give me options afterwards. 

There were a lot of things. If he had breastfed right away. There’s a lot of sugar in the colostrum. If he had been left attached to the umbilical cord, there’s a lot of sugar left in that blood if he had been put on my chest that can help regulate blood sugar, but I wasn’t allowed any of that because the system calls for a C section where the baby is kind of whisked away, right away. And so I lost that control. I lost the ability to bring his blood sugar up in ways that naturally my body could have done so in part it was frustration at my body and frustration of the system.

P: Yeah, that sounds like that sounds extremely frustrating especially since you’re used to type one means you were born with it. Is that what type one?

A: No, I’m I wasn’t born with it. I was 11 but I’ve had it

P: for so long that you have for most of your life control your own blood sugar. So to have that whisked away at such a critical time I can imagine it would be would feel really unnerving and not right especially I mean, I guess if he if the care team had taken over and he did not have high blood sugar. Yeah, you’d have been okay with that.

A: I think yeah, I mean, it would have gone different if it had been a vaginal birth. They could have left the cord attached. They could have put him right on me. The C section definitely complicated things. But of course in other countries in Australia, I know specifically in Australia, they do allow skin to skin contact on the C section table. They will put the baby on mom on the operating table while they close mom. And we had even asked if they would let my husband do it because any form of skin to skin will regulate breathing blood sugar, heart rate all those things. And they said yes, so he had his or jacket on backwards so that he could put him on his chest he took his shirt off and had the OR coat on but then they took him away and just didn’t didn’t let my husband do that either. So that was definitely anger the system. They even took him to the NICU and didn’t tell us where he was they my husband had to go searching around the hospital for him

P:  Yeah, that that feels like a dream where you show up to a test with no clothes on or something. Exactly. Where is my baby? I’m sure you know that the placenta develops insulin resistance later in the pregnancy. So it becomes harder to regulate.

A: It’s nuts because actually the hormones in the first trimester make you super insulin. Sensitive. So you’re full of very, very low blood sugar in the first trimester. second trimester is that honeymoon period. And then third trimester you become resistant so then you need more insulin. So it’s just it’s it’s massively frustrating to to control all of it because it’s really even though I’ve dealt with it my whole life. It was very different in a pregnancy, adding on the worry of like what it’s doing to the baby. I’m like, Oh, I gotta get this right.

P: And I can’t imagine it’s made worse by the fact that everyone told you it was fine.

A: Yeah, I mean, he was healthy. He came out of the NICU after a couple of days and everything was okay. We went home. I was okay. We were both healthy. And yeah, but I think I really started to realize it because I would see articles on Facebook, about like skin, skin and how good it is. And I would just be mad. I was so angry. And so when I sat down to write it down, that was when I realized it was about the control that was taken away from me. I was frustrated. I wasn’t happy with my birth. I really needed to process it and heall it and understand what happened. And so then that brought up the idea of like, I need to help other moms do this. I need to write a book that teaches them how to process their birth by writing about it. So that’s where the idea was born was. I processed my own birth by writing it down. And I filled a whole journal. It was like, three days straight, where I was just writing and scribbling and going crazy.

Paulette kamenecka  11:00  

So that’s amazing. And so and so now let’s was hear how Katie comes into the same vein. Why don’t you give us a little like, sense of what your experience was

K: the traumatic the other traumatic birth right? Yeah, so I knew right I had the boring pregnancy, the textbook pregnancy, and then I read about the book but like I never read anything about C section, because everything was progressing normal, flipped, everything was good. This 

P: is this the first birth?

K: this is the first birth. And then it would have been five days before she was due. So she was born on July 6, and fourth July fireworks are wonderful. Then on the sixth, I had a couple of days where I noticed some upper back pain that was just a little off and felt like I assumed I’d done the like moving furniture in the baby’s bedroom. And you’re not supposed to do that. I just pulled something but it was like progressively getting more painful and at night it was really really bad. So I woke up that morning and I just went ahead and called my doctor was like, you know, hey, maybe just muscular like let’s just beach like we don’t come come into the hospital. I’m on call this weekend. And I was like, oh, you know, that’s sort of a dream. Like your doctor is the one who’s on call, like, Okay, sure. Yeah. So we go and they take my blood pressure and they’re like, have you had blood pressure problems during this time? You know, it’s funny here in Germany, you get this mother book, like it’s like a past book that keeps all your blood pressure’s all your all your stuff. And I look at that now I’m like, Man, that would have been amazing to have because I was like, No, it was always normal and like perfect textbook, and I wish I’d been able to show the book like, here’s all the stuff. 

P: Yeah. 

K: So they call the doctor because every time they took it off, like I’m sure I’m just nervous being here and it’s just affecting me and like No, no, it’s that. Like it’s it’s really quite hard. And they call the doctor and she ordered blood work. And that’s when they found that I had HELLP syndrome and showed up really fast. Some people get in their second trimester, some getting the third and then it’s you know, they have a little bit more warning than I did. And yeah, what was happening in my upper back was my liver was struggling. And so I was feeling the basically the spasms or pain of that. And they were prepping, they had to prep me very quickly for a blood transfusion. And they were like, you know, we just don’t know we don’t know if you can clot and My poor husband, he he was just a big shock to both of us. I was still willing like, oh, everything’s great. Everything’s fine. I wasn’t feeling worn down. I wasn’t feeling like something that’s happening. And the doctor she was an amazing doctor, and she truly said like, you know, we don’t have time to even induce you. Like baby really needs to come out because it’s not anything wrong with a baby. It’s basically killing you 

P: Yeah, 

K: so it’s time. It’s just time. And yeah, it was one of those where you don’t have time to think you go into like Project mode and truly was primed for a moment like that. Throughout my whole life has always been, you know, crisis management or helping with you know, in the university helping with different things. I always had training on this I knew exactly call my mother do this do all these things. And it was after she was born. So I got I got to meet a 45 minutes after I was under my husband was in the nursery waiting for her. Nobody got to be in there with us. It was after that that it kind of set in I was on magnesium sulfate.  It was a big shock to the system and then I had the sweet little you know, baby which I attached very quickly to her and my husband for man was like for three days having to just do it himself. Like get her dressed change a diaper quarterback next to me anything I needed, so exhausted, and I had not for a whole year after saying I gave birth, because for me giving birth was vaginall. And it was wasn’t until I did EMDR therapy that it was like okay, I can say I gave for and it wasn’t about control of the system. It was my own body. A feeling like my body had failed me. And that you know, like, how does this happen? Like, everything was textbook and then all of a sudden it goes south really quickly. You know, and it’s kind of like what he did. Like you just learn as much as you can after the fact and you start to better educate yourself on some of the things and my doctor handled everything so wonderfully. But there were parts of the story that did upset me. And I realized, you know, really it was also writing the story. And I actually had two miscarriages in 2019 and was able to reconcile and heal some of the stuff from the first trauma of my daughter being born by the anesthesiologist, at that first birth was talking about the murders that had come through the night before and all the blood and glory all the seven I’m like I’m about to go under and you’re talking about these deaths. So when I had to have a operation for the first miscarriage, I was like Can I speak the anesthesiologist and she came in she’s like, What can I help you with it? I was like, you are only allowed to talk about positive things around me. This like weird, like, only positive thing and I am walking to the OR. You’re not wheeling me on anything. I am walking I can get up I am going like there is nothing where my body feels like I can’t do I can’t take care of it kind of thing. And it was amazing. I had a wonderful team. I was visiting my family in the States when it happened. And it was just an amazing doctor and nurse staff team as well. And we’re like only positive you can you’re in control. You can do this whatever you need. That healed that first trauma fully after that first year with EMDR therapy being able to say for and then being able to heal the I had a voice and I could say hey, stop talking about things that are negative when I’m about to go under and I don’t know if I’m gonna make it that was really really powerful. Really, really helpful.

P: Yeah, that sounds like a lot of good lord. After the three days I’m like he’s gonna sulfate blood pressure’s normal. Everything.

K: You have to stay on blood pressure medicine for I think I stayed on for about four to six weeks mine my blood pressure regulated pretty fast went back to normal so you’re you’re checking it every three to four hours still at home, and you’re taking the medicine. And then there’s a point where as I with my third child, I had blood pressure issues after the birth and there’s a point on that medicine where you’re starting to regulate and then it gets to be too much and you get really lightheaded easily so like, call them you know, like it’s time to get me off with me off this. Yeah, so they had to put me on that to just keep things regulated until my body could just go to more baseline status.

P: And so being a therapist, my sense is you understood the obviously the power of talking about what happened, but there’s something special about writing it down, right?

K: Yeah, completely. That was the big thing that when any came to me and we really started talking about this book, it was like it needs to have a therapeutic side to why writing is going to be so helpful and there is something about seeing it in front of you because when you speak it, it’s not there anymore. Unless you record it and watch it again. When you write it and you have to look at it, you know or type it out and you look at it. There is a you’re more in touch with what happened in a big part of the book, we talk about how you really get to be the observer versus go through the trauma again and that and we guide you on how to do that in the way that you storytel And the way that you write about certain situations that occur. It’s not to dumb anything down or make false positive it’s truly just still see it on the paper but not feel it where you feel like everything’s just been ripped back up again. And that was really important for both of us like we wanted this to be a therapeutic tool not a write it all out and then like then good luck… Hey, even up up you know, we teach a lot of therapeutic tools of how to deal with the emotions, how to deal with the analytical mind that wants to attack, criticize your writing. And then at the very end, we talked about closure practices and what to do with your birth story. Because most of us feel even more empowerment by helping others to not have to go into what we did and that was a big thing that he said like this book is going to be about other women able to save each other from future situations and maybe change the system. By being able to speak out more so many of us forget you can go back and talk to your doctor or your nurses afterwards. And they feel like oh, you know, it’s not my place and things like that. But the reality is is you are paying them to do the service. And they are human. They’re going to make mistakes. That’s like me as a therapist. I am human. I’m going to say the wrong thing. I’m going to ask the wrong question. But I know that people hold me to a certain level just like we do doctors and nurses. So talking with the person and then being able to go like even just saying I’m sorry, or I didn’t realize or you know, you were our fifth C section that day, and I was just exhausted.

P: Yeah, context can be really helpful. Right? 

K; totally

P: Yeah. So I totally agree that conversation is ephemeral and so it’s hard to get the same feeling from it. It’s hard to become the observer that although there is something I think in the back and forth and having people ask questions, and it’s, that’s a little bit like editing, right, where you’re reviewing things that you said, and is this true? And how do I feel about this really, and especially in your case, Amy where There’s there’s a lot of subtlety to it. And there’s a lot of things that go on slightly differently. You might feel totally differently about your birth story.

A: Completely. Yes. But I think that’s why writing it down and understanding what did happen. Was was what helped me is that beforehand, there were a lot of what ifs there were ton of what ifs and so I researched the heck out of it. I knew everything that could possibly happen. But it was the processing afterwards and understanding the path that things did take what reality actually happened and we talked about this a lot in the book we actually start out with looking at what your expectations were; what you hoped was going to happen what you dreamed for. And then you’ve turned that around and you compare it to what really happened and why did that not work for you and why did you feel the way that you felt? Because, again, we don’t have a ton of control over how it plays out?

P: Yeah, I think you’re I think it’s smart. And I’ve spent a lot of time on the podcast talking about what your expectations were because so many of them are so deeply varied that you don’t really know about them until they’re frustrated right until it doesn’t happen. So like Katie and your story where you’re saying, I couldn’t call it a birth because that wasn’t my idea of a birth. That idea came from somewhere, right?

K: Right. And that was something that when we the expectation section is quite thorough on you know your mother women’s voices near life, social media, society, culture, religion, all of these things that really embed messages into your mind. And the beautiful thing is the book is a journal as well. So it has lots of prompting questions. So you’re not just like, okay, read this. Now. I’ve got to figure it out. Even in the writing of the story. There’s so many questions to help you break it down. So you don’t get caught up in the Okay, where do I go now? Or how do I do this? And with the expectation section, I think it really helps you start to put on paper oh my gosh, I I thought this thought this 

P: Yeah, 

K: you know, there are simple things that most of us don’t even realize that we actually think like that good things happen to good people and bad things happen to bad people. That’s why we go why is this day like this thing? What did I do to deserve this? So many women feel that way when their birth doesn’t go, right? What did I do? What did I did and they put the blame on themselves. And when you sit down and write down what expectations you have in life, and of birth and pregnancy, it helps you go like, well, that’s kind of crazy because that’s not how life really goes like okay, so how do I start to rewrite those beliefs because I’m now raising a little being and I don’t necessarily want them to, especially if I’ve three girls, I don’t want them to fall into that same pattern. I want them to know that that scar that mom has is the same way that they email is one of them came out badly to C section. All of it was giving birth. So I talked about that, you know, how do babies come out? Well, you know, there’s there’s a couple of ways here and here. You see this this right here this bar, how to um, you came out. One of your females are here, and it just normalizes it. I didn’t have those conversations growing up. I grew up in a Southern Baptist family. We didn’t talk about things. You know, there was no, it was only on my birth was fast and simple and easy. Or for my mom the birth was difficult. But there were C sections in my family. And there were miscarriages or things like that. So it’s, you know, you just didn’t talk about those things. And that’s something I want different. You know, it’s a generational thing that I’m breaking, really that we can talk about our bodies and how babies come out and how difficult it can be.

P: Yeah, I think it’s unfortunate that feels like culturally there isn’t space for and so like all these birth stories, have things about them that are complicated and hard and frustrating and not what we expected and beautiful and completely miraculous to have a healthy children at the end of them. Right. So it’s just a much more complicated story is kind of the real one, but that’s never what you’re sold, right? You’re sold ice cream and butterflies and that’s all there is it’s

K: Yeah, rainbows and unicorns always turn out that way and we even address you know, those moms who did have there are some moms who have wonderful birth experiences. And then that want to sell you on how they did and how you can follow in their footsteps. Our bodies are all different, like my HELLP syndrome was not anything on my health radar. Whereas with Amy having type one diabetes, she already knew, hey, I have these risks. You can’t then go oh for both of you it would work to do this, like this. Yeah, no birthing and all these things like it’s beautiful that there’s all these resources, but it’s not a one size fits all.

P: Yeah, for sure. I’m guessing Amy and Tom will correct me if I’m wrong here but even preparing for things that might happen. feels different than actually experiencing it

A: very much. Very much so because I knew the clinical terms for things I knew what to, quote, expect, but I didn’t know what emotions would come along with that. I didn’t know how it would feel 

P; Yeah. 

A: To experience all those clinical terms that I understood and I my my dad’s a veterinarian, so I grew up in a somewhat medical family like we do understand how bodies function.I’ve watched Cows and dogs and horses give birth and sheep like I’ve watched a lot of animals give birth but the the internal the mental, the like going through it is just so different than reading in a book or watching someone I took photos of a friend at her birth so I had been out of birth. And it still you can’t know what to what you’re going to feel what you’re going to experience internally. That that mental hurdle that mental marathon that you’re running, when you give birth is just an explanatory like you just you cannot explain it

P: Yeah, the embodied experience like type defies language, right? It’s

A: very much and that we kind of discuss that a little bit in the book as well because we want women to understand that your identity is entirely new from one moment to the next you you go from a pregnant woman to a mother, and it’s just a massive shift that isn’t really mirrored in anything else in life. There. There are other big shifts. There are other big changes in life. But that is one that is so wholly and completely different. And it’s it it takes a little bit of getting to know yourself again, because you are a new person on the other side of it.

P: Yeah, I interviewed someone not that long ago who said like the old you is gone, right? There’s no cross that threshold and then you without children no longer will ever exist. And it’s just a completely different space to occupy, which is which is a giant thing that we don’t talk about at all. You know, we talk about the strollers and the Boppy and the you know, baby clothes but not the really important thing. So it’s so great that you guys are are talking about that.

K: Yeah, I mean, this is this is why there’s so much of the grief work I do because people hit the midlife crisis and they’re just like, this isn’t the life I signed up or I’m like because you weren’t grieving all the shifts and changes up until now. 

P: Yeah, 

K; when really look at that. That career didn’t work out the way you thought or motherhood wasn’t what you thought it would or being married or divorce or you know all of these things. And if you’re not grieving men doesn’t mean like you’re holding on to it and wailing and all that but like, really, truly embodying grief and going through that work. Then you’re going to hit a point in your life where you really feel the identity crisis that makes you kind of go do other things that you regret later on or hurt other people are really implode on yourself. So for us it’s like a good stepping stone of like, okay, we want this experience

Unknown Speaker  0:03  

It takes a little bit of getting to know yourself again, because you are a new person on the other side of it.

P: Yeah, I interviewed someone not that long ago who said like the old view is gone, right? There’s no you’ve crossed that threshold and then you without children no longer will ever exist and it’s just a completely different space to occupy, which is which is a giant thing that we don’t talk about at all. You know, we talk about the strollers and the Boppy and you know, baby clothes but not the really important thing. So it’s so great that you guys are are talking about that.

K: Yeah, I mean, this is this is why there’s so much of the grief for it and I do because people hit the midlife crisis, and they’re just like, this isn’t the life I signed up for. I’m like, because you weren’t grieving all the shifts and changes up until now. Yeah, and really look at that. That career didn’t work out the way he thought or motherhood wasn’t like he thought about it or being married or divorce or you know, all of these things, and you’re not grieving. That doesn’t mean like you’re holding on to it and wailing and all that but like, really truly embodying grief and going through that work. Then you’re gonna hit a point in your life where you really feel the identity crisis that makes you kind of go do other things that you regret later on, or other people are really implode on yourself. So for us, this is like a good stepping stone of like, okay, we want this experience, to not be something you own for so many years that you don’t later on, though you are.

P: So it sounds like what you’re saying is processing the experience in some way once you integrate it into your life to get a better sense of where you are in the moment.

K: Yes, that’s a wonderful Yeah, summary.

P: Okay, good. That sounds that sounds. That sounds amazing. I love that there’s space to journal and that there are prompts because for many people, it is a giant experience where it’s hard necessarily, unlike your experience, Katie where it’s obvious where the extreme elements lie. You know, for some people, it’s all over the place, right? There’s something weird in the first trimester or the whole pregnancy felt weird or something right? It’s just it’s not so cut and dry. So those signposts about like, what are you feeling about this or that seem like they’d be totally useful to help people plot that out?

K: Yeah, a lot of what we were finding already in the market around the story of create your birth story, didn’t guide you enough. Didn’t really walk you through the steps. And because of that, you lose motivation. Yeah. And with each tab or to have a chapter that has so many questions, that kind of keeps the ball rolling, you stay invested, and you start to really see the healing power of what you’re doing.

P: And do you guys have like a repository for those stories once women write them? Like a website? With the book or

A: that’s, that’s in the works? That will be a thing? Yes, definitely.

P: That feels like wailing wall or something. That’s cool.

A: Yeah, I mean, one of the things we want to be careful of is not pushing that, that same trauma onto the next mothers. So we want to make sure that if someone is sharing their story, that they’re doing it in a way that shows that they’ve healed that shows that they are empowered by learning their story and working through their story. Because what we’ve found is that you know, you have grandma who comes in and tells you your baby shower and you’re just like, Okay, I’m terrified now. Thank you. And we don’t want people to be pushing their trauma onto everybody else. So the end of the book really works towards finding ways that you can help others using your story. So either you learn how to tell your story in a way that doesn’t everyone else, or you potentially create an oral version, which is what Katie has done with her girls is created an oral version for your child which helps you understand how to tell the story in a way that it doesn’t get rid of the nasty parts, but it makes them powerful, it makes them mom went through this and she did it. And that’s the good part of this. So yeah, we

P: are able to see the action. And I would say good news. Bad news is that, no matter what, although, I’m sure if it’s your grandmother, you think there’s genetic connection, like maybe I am in the same line or we’re dealing with our mothers, right? How were how were their births to kind of project what will happen with us and mine bear no relationship to my mother’s. So I don’t know how useful it is but but like I can feel the nervousness when you describe like the grandmother saying that to the granddaughter, but I think, you know, this is like a tricky line to walk out. Sharing the trauma, scaring other people. I think it is it is necessary to get really, really out there to get like a true narrative of this is what it could contain. This is how I managed it

A: . Yeah, I think and I think you’re less likely to push the trauma on someone else if you have processed it. The problem is grandma has not actually dealt with the fact that her birth was crazy and insane and scary. And so she’s just kind of pushing the scary onto the next person. Whereas if you actually process it and deal with it and heal from it, you can still share the parts that were not so great, but not in a way that’s going to trigger the trauma.

K: and I think they can sayThings like I wish I had told the nurse I wish I had stopped and asked more questions or that allows that to go okay, let me make a mental note of that or tell my partner we need to ask a lot of questions and write my questions down. It’s how you start to help others by sharing also when you realize looking back wished have been done differently. Or you know what, like you said sometimes, context helps so much so being able to heal that you can say hey, well I realized my doctor is human, and he or she will make decisions on the spot visual variety. That then are out of my control unless I yell stop. Yeah, no, you don’t have the right to do that. But we’re not going to do that because this is a doctor bus. So it allows the next generations of moms coming up to think differently in the moment or to feel empowered to get a doula or someone to be in there with them that can empower them. Because they thought oh, wow, you know, story, and I really need another support person because my husband might almost pass out. Might not be able to handle what comes to me. And that’s a lack of any. Why not? Why not have that extra support? So really, that’s where we think it can start to shift shift how people speak to the system, how they handle things going on around them and how they feel more empowered.

P: That’s awesome. We remind us again what the title is?

K: yes, it’s giving birth to motherhood.

P: that’s a great title. So congratulations on that. Congratulations on the book and where and when can we find it

 

We’re launching it to tember 26th Although around the first week of September, it will be available for pre order. Okay, cool. That’s anywhere, anywhere, anywhere and everywhere and anywhere.

PThat sounds awesome. Thanks so much for coming on and sharing this is such a great idea. 

A&K: Thank you for having us. 

P: Thanks again to Amy and Katie for sharing a little bit about what motivated them to write the book, Giving birth to Motherhood. I love it when someone uses the challenging parts of their own experience to try to pave the way for an easier experience for the people who follow after them. I’ll share links to Amy’s website and Katie’s website in the show notes. You can check that out at war stories from the womb. Com. Thanks for listening. We’ll be back next week with another inspiring story.

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