“Part One: Two Struggles – getting pregnant, then ending that pregnancy”

In part one of Penina’s High Risk Birth Story, she shares the difficulty she faced getting pregnant due to PCOS and the struggle of watching friends and family members getting pregnant while she faced infertility. After finding success with IVF, a 12 week scan showed significant defects including gastroschisis and omphalocele.

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Dr. Fox: Welcome to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman Podcast.” I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you, the listener, a window into life-changing experiences in pregnancy, fertility, and childbirth. All right, Nina, welcome to the podcast. Thank you so much for volunteering to tell your story. How’re you doing today?
Nina: I’m good. Thanks so much for having me.
Dr. Fox: No, I really appreciate it, you reached out to us to tell your story. And you’ve been through a lot, some tough times, some good times. And I think that there’s so much you have to say, and you have such a great perspective on all of this. And I think that our listeners are really gonna appreciate hearing you tell your story today. And then again, next week, we already prepped for that.
Nina: Thanks so much. I’m happy to be here. And it makes me feel really good to be able to tell my story, share it with other people who might be going through it, and also shed light for people who have family and friends who might be going through these kinds of things to help support them.
Dr. Fox: Yeah, that’s been a recurring theme on this podcast. We’ve been doing it a little over a year now. And, you know, one of the things I always ask people sort of why are you telling your story? And it basically breaks down to one of two things or both. One of them is, you know, it’s really therapeutic to tell your story. I mean, you know, who the hell is gonna listen to you for an hour? I mean, it’s just a firestorm.
Nina: And that’s definitely true. There is definitely a catharsis there. Yeah.
Dr. Fox: Yeah. And the second is, you know, people wanna know, and just because they might be going through something similar to this… Again, every story is unique. And no one goes through exactly the same thing but there’s so many recurring, you know, themes and, you know, motifs and whatnot. And also for the people who have not or will not go through this to understand for others, because it’s gonna happen to somebody. And, again, our stories, it’s not only disaster stories. We tell really happy stories, too, and how to process that, and just what it’s like, and to understand, it’s really the whole gamut of emotions. What led you to volunteer me. First of, how’d you find the podcast, and what pushed you over to actually send that email to volunteer?
Nina: I kind of stumbled on the podcast… I think I saw someone I knew post on Facebook that they had been interviewed. And then I love podcasts. I listen to them all the time when I’m, you know, doing anything. So I looked it up and I saw someone else I knew who had spoken on the podcast and, you know, it just sort of resonated. I felt like, “Okay, I definitely have a story to tell here.” And I think what I wrestle with sometimes in telling my story is just the insecurity or self-consciousness of, like, am I being dramatic by wanting to tell this story over and over. But then what I think about, like I said, earlier, it’s just like, who it might help. And that kind of just pushes me to do it because I know had I been going through any of the things that I’m gonna be talking about, if I had heard someone talk about it really openly, it would have helped me so tremendously. So I think that’s what, you know, pushes me, in addition to the catharsis we talked about, there definitely is an element of kind of processing and talking through it, so that kind of makes sense of it.
Dr. Fox: Now, when you volunteered, did you know at the time from the podcast, like, had you listened to enough podcasts to know that, hey, these are the people who delivered my two kids? Did you know that right away or you found that out sort of, like, you know, afterwards?
Nina: I realized right away. So that was also I think… I was like, “Oh my gosh, these are my doctors.” So kind of exciting.
Dr. Fox: Because I didn’t realize that right away. You know, when someone sends me an email, I don’t look in our medical record and, like, was that a patient of ours?
Nina: Sure. Of course.
Dr. Fox: So, I didn’t know at first. And then after a time, I’m like, “Oh, yeah, wait. Oh, yeah.” I was like, “Oh,” you know… When you get to my age, the lightbulbs, you know, go on a little bit later than they used to.
Nina: Well, you also have a lot of patients. I mean, you know, I wouldn’t expect you to remember every single name. So…
Dr. Fox: That’s true. But, you know, I think we remember more than people would expect us to because we have a lot of patients, but it’s not one-time visits. I mean, we see people for years and sometimes every week. And so, they’re pretty intense relationships, so in a good way intense. All right, so thank you for volunteering. And let’s jump into it. So, take us back to before your first pregnancy. So you know, what year are we? Where are you in life? What’s going on with you and your family at that time?
Nina: My husband and I made the decision that we wanted to try to have kids. I think I remember my husband being ready for it before I was. And then, you know, he was kind of just like, “Okay, you know, you let me know when you’re ready.” And I think I got to a certain point and I was like, “Yeah, I think, you know, I wanna do this. And then, you know, after a few months, when it, you know, wasn’t happening, I wasn’t overly concerned, but I figured I’d just ask my OB about it. And when I mentioned to my OB… So when I was 16, I was diagnosed with PCOS, which is polycystic ovarian syndrome is, I think, very common. And it doesn’t necessarily indicate that someone would have fertility problems, but it can. So he recommended I just go to an infertility specialist just to check things out. So, I did. And then it was kind of just a domino effect from there is how I remember it, of just like one thing after another. They kind of kept finding other things that indicated it would be really difficult. And so, I think what’s interesting is that it’s not like we were trying for years. Like, we had tried for like maybe six months, which is a pretty short time in the scheme of things. But with all these things that were discovered, it looked bleak. So we were like, “All right, I guess we’re gonna keep, you know, doing different things.”
Dr. Fox: Right. How old were you at the time? Now, you have to do the math.
Nina: Let’s see. Yeah, I know. So, let’s see. I was 27 or 28 when we first started trying.
Dr. Fox: And when you first started trying, did you have like a vision of what your family would look like 15 years later, you know, two kids, 10 kids, you know, 2 sets of triplets? I mean, just a lot of people have these sort of like thoughts in their head before they start.
Nina: I’m one of three. My husband is one of three. So I think, I think I always thought three kids was what my family would look like. I joke with my husband, and he’s the most unintentionally mindful person. Like, he’s just very much in the here and now. Whereas, I’m always thinking about the future and planning it and kind of visioning it out. And so, when we started trying, it was always like, all right, if we get pregnant right now, then nine months, we’ll have a baby, and then that baby will be this old by the time it’s, you know, Christmas time. And so it’s like, there’s all these forward-thinking moments in the future that I was like thinking about, as we’re going through this because when you’re going through this process, so all you’re thinking about is the future, right? What’s gonna be, and it didn’t really occur to me that there might be kind of stumbling blocks or problems to get there. It was like, all right, this will happen. It might take some time but…
Dr. Fox: Was the fertility process and going through all that, was it disappointing, or was it sort of just, okay, this is what we gotta do and, you know, like checklist type of thing?
Nina: One of the things that was hard was I definitely had a lot of family and friends around me who were getting pregnant easily, having babies. And so definitely, it was this sense of kind of feeling left behind of, like… And not just left behind. I remember thinking, “Oh, my God, some people can just have sex and have a baby.” I was like, “You don’t have to go through all this stuff and pay all this money.”
Dr. Fox: Yeah, think how much money they’re saving doing this.
Nina: I was like, “Yeah, that too. And just like the ease of it, like, oh, like just happens. Like, all these medical procedures, I think that was what was really frustrating. I was very open with my friends and family about it because for me, you know, it was such a big… It was taking over my whole life. And it was important to me to be, “Yeah, I needed that support. So I was just…” You know, my friends and family were incredible and really supportive. And I had really honest conversations with certain family and friends who were either pregnant or having babies. And they’re like, “Tell me how to do this. Like, do you not wanna see me for a while? Do you want wanna be in…?” You know, it was…
Dr. Fox: Right. That’s very kind of them.
Nina: Yeah. And I also protected myself, right? Like, I remember on social media, I, like, unfollowed people I love but just because I was like, “I just don’t wanna see baby photos right now.” You know?
Dr. Fox: Yeah. I’m trying to tease out if the frustration is, “I want to be pregnant and I’m not.”You know, “I want a baby and I don’t have one.” That versus, “Why am I not getting pregnant? What’s wrong with me? Why is this happening to me? I’m a good person. Why would this happen to me?” That sort of existential frustration versus the practical frustration unless it was both.
Nina: Good, good question.
Dr. Fox: See, you thought you’re volunteering for just a pop case. No, this is…we’re gonna be real serious here.
Nina: I love these thought experiments. Great. Probably both. But yeah, I think the immediacy of having everyone around me for having it happened for them easily and quickly, and I actually should mention that I did have some friends who were also going through some infertility and that was, like, hugely supportive to have that. You know, and again, that was also because I was open about it. Then I remember, I spoke to a friend who was like, “Oh, my, you should talk to my friend. She’s going through this or she just went through it. Now, she has a baby but she went through IVF.” And so, you know, kind of creating this, like, support network of people who were going through it or had gone through it. And to me, that was, yes, such a big reason why I was so open about it. And my husband, he understood why I needed to be open about it but he was very much the opposite. He was, like, this is not something he was gonna talk about with… I remember I had a friend. We were both going through this. And we were friends as couples. And I asked my husband, “Do you talk to, you know, my friend’s husband about it? Like, we’re both going through this identical, like, the same time?” And he was like, “No, no, no, no, no. Are you kidding? No.”
Dr. Fox: Nope. Never.
Nina: Really? Like, what? You know, it’s a gender stereotype.
Dr. Fox: Yeah. Yeah, it’s a gender stereotype for a reason. Yeah, there’s a lot… I mean, the roles can be reversed there. It can be flipped. And, you know, anyone could be anything but yeah, that is a common occurrence. I was gonna ask you about that. Are you by nature someone who likes to share a lot, you know, with your family, with your friends? And are you an open book in general or was it this specifically that you made a decision, I need to be open about this because otherwise, it’s just gonna be too hard. And this is what I need to, you know, get support and to get through this?
Nina: I’m pretty much an open book. You know, I like to share what’s going on in my life. My husband says I have the easiest face to read. Like, it’s hard for me to…
Dr. Fox: Don’t play poker. Yeah.
Nina: Yeah, not a good poker player, you know. So, yeah, I think this was in keeping with the way I’d always done things. But I think this was probably the first significant time in my life, which I’m very blessed and lucky, right, that I had like a really big challenge. You know, I think it was like the first, like, major hardship I think if I think that, you know, everything else, you know, just like kind of went along easily. Things happened easily for me. So I think this was probably… So I think, actually thinking back to your question about that existential, like, why is this happening to me? And this being, I think, pretty much the first time that I was like, “Life isn’t supposed to be this hard,” you know? Which, you know, I think looking back, I feel selfish. It’s like, I was very lucky. You know, this was the first time I had to come up against something that was really, really difficult.
Dr. Fox: I don’t think it’s selfish. I think, you know, some people are fortunate that they never face that. I think that’s unusual. Everyone faces something. And for some people, unfortunately, it doesn’t really hit them until they’re adults, you know, in their 20s. And for some people, it’s when they’re young children and some people when they’re older adults. And, you know, life is just like that. You know, there’s a tremendous amount of luck that dictates how our lives are gonna unfold. And yeah, you know, you were lucky that nothing really major came along until then. And then when it happens, it’s a shock. It’s a shock to the system, whatever it might be. So ultimately, you did get pregnant. How long did it take and how exciting was that when it happened for you?
Nina: I think it was about seven or eight months of starting, you know, first with Clomid, and then an IUI, and then IVF. And it was the first… Let’s see, I did my egg retrieval and I was supposed to have a fresh transfer. And then I forget if it’s called hyperstimulated or overstimulated.
Dr. Fox: Yeah. hyperstimulated.
Nina: It was a mess. And there was some kind of injectable pen that malfunctioned. And basically, yeah, it was really scary. My husband… So he was the one giving me all the injections. And not his fault. It was because the pen malfunction he gave me like too much of something. I can’t remember what it was.
Dr. Fox: Yeah, one of the stimulating hormones.
Nina: Yeah. And so then my ovaries are like…
Dr. Fox: Hello, good morning. Good morning ovaries. Yeah. And you have PCOS, they’re very sensitive to that.
Nina: Yeah. So yeah, it was not fun. So, you know, my doctors at the time were like, “Yeah, we’re not gonna put an embryo in you right now. Your body’s, like, freaking out.” And I don’t wanna trash anyone specifically on this podcast, but I will say my first doctors that I went to for infertility, I found it was like a factory. It was, like, very impersonal. They were, like, clinically, very good and, you know, they’re attached to like a big hospital and they’re a big name, but I was like… Yeah, so when we called, when that happened, I remember the nurse… It was like a Friday night. The nurse was like, “What do you want me to do? I’m not there.” I’m like, “Well, you’re kind of in the end.” We actually called Feedom Pharmacy, which is the provider of all the medication, and the pharmacist was amazing and super helpful. So, it was kind of a funny… Yeah, it was crazy. Anyway, so…
Dr. Fox: What do you want me to do on that? I’m not there. Oh, show me a little love. Do something.
Nina: Yeah, it was so bizarre.
D. Fox: Tell me what to do.
Nina: Anyway, so I had to wait to do… And, you know, at the time even though I was feeling sick because of the hyperstimulation, I was so frustrated because I was like, this is gonna happen and then it’s like wait another month for a frozen transfer. And in the moment, I remember every time with IVF, every time there was like a delay, even if it was a week or a month, looking back, it’s like, who cares? Like, why does that freak me out so much? But I would get so frustrated.
Dr. Fox: No, that’s normal. I mean, it’s such a hard process to go through. Every day is like you wake up and it’s just anxiety, and stress, and frustration. And, you know, it’s annoyance, and disappointment, and all these things. And so every time there’s a slight delay, like, “Oh, God, come on, you know, another month. Seriously?
Nina: Exactly. Exactly. Yeah, I think there was one time there were about to do the retrieval, and then I had cysts because I have PCOS, and they’re like, “No, like, let’s wait like another few weeks.” I’m like, “No.” You know, it was so frustrating. Anyway, so then we did the frozen transfer. And it took. And I remember we found out I think, it was like around New Years, which is my birthday. So, it, like, felt like so amazing, like, it’s my birthday. And my husband got me like these earrings, like, to commemorate it. And it was amazing. And it was the best feeling. And I definitely told some… I mean, we waited a few weeks, but we told friends and family, very close friends and family pretty early because I had been open. Everyone was sort of with us on this journey. And it was so exciting. I felt like all the stress and anxiety was, like, gone. I’m like, “Okay, I went through all that. But, like, I’m here now. I’m pregnant.” Yeah, it was awesome. And I don’t think I was… You know, I had the typical, like, a little bit of nausea, like, but it wasn’t crazy. I didn’t have, like, awful morning sickness or anything like that. So, I was able to even enjoy that first trimester. I think a lot of women that’s hard to do. And I was like, “Yeah, I’m a little nauseous, but it’s fine. Like, it’s not that bad.”
Dr. Fox: You kind of answered my next question, which is a lot of people who go through, you know, it doesn’t have to be someone who has fertility issues. It could be with someone gets pregnant easily but frequently after going through all the fertility and, you know, all of that anxiety, it sort of goes in two different directions once you’re pregnant. One direction is like, oh, thank God, I’m pregnant. Now, everything’s gonna be fine. And you’re just sort of, like, in bliss. And the other half is, what next? What’s gonna happen now? All these horrible things have happened to me. But it sounds like you were the first that you sort of like, “All right, now I’m pregnant. It’s all gonna be good.”
Nina: Oh, yeah. No, I was totally definitely so excited. So happy. It felt like we finally did it. All the hard stuff was behind us.
Dr. Fox: Right. Which is did not ultimately come to fruition.
Nina: Right. Which is. Yeah. Yeah, kind of…
Dr. Fox: All the hard stuff was in front of you, unfortunately.
Nina: Yeah. Yeah, exactly.
Dr. Fox: So what happened with that? When did it turn after you had your, sort of, you know, joyous first trimester?
Nina: Yeah. Then at 12 weeks was the nuchal translucency scan. And I’ll mention not to trash someone else but…
Dr. Fox: Again, you’re not trashing me. So it’s all good.
Nina: No, no, this is all before MSM. You know what? Actually, one second like, I’m wearing earbuds and I think they’re low on battery. So why don’t we just…? I don’t want the call to drop. All right, so after going through IVF, I decided I wanted to give birth at Greenwich Hospital, which, you know, I had heard this reputation for kind of being this spa hospital.
Dr. Fox: A spaspital.
Nina: Exactly. They have like a grand piano when you first walk in and they…
Dr. Fox: Yeah, that’s important if you’re giving birth.
Nina: Yes. It’s very important. Like, who cares about the NICU? Like, a piano in the lobby is very important. Yeah. And they just like… You know, everyone had a private room. You don’t have to pay for it. And it was just like, you know, supposed to be the very… So it was like, you know, that’s what I deserve after going through this. So I found one doctor who had…like, I could see him in the city but he delivered at Greenwich. I was like, “Perfect. I’m gonna go to him.” So then my nuchal was in Greenwich at that hospital. So I go and I’m super excited. And I was just mostly focused on the fact that at the nuchal, they could probably tell you the sex of the baby. So I was excited to find that out. And I wasn’t really thinking about, you know, anything else. Really what the purpose of the nuchal translucency scan is, which is I think to check for chromosomal abnormalities.
Dr. Fox: Right. Right. And ironically, you can’t reliably check the sex of the baby at 12 weeks by ultrasound.
Nina: Oh, really?
Dr. Fox: Yeah, it’s quite unreliable. There’s a blood test that’s more reliable, but the ultrasound not so much.
Nina: Right. Oh, that’s so funny. But that’s what I was like… Yeah, I guess I was super focused on that. So, we go to the scan. I’m just so excited. And, you know, the hospital is like, all fancy. I’m like, “This is it. I’m gonna give birth here. This is gonna be amazing.” And my husband’s with me and the tech is doing the scan. And then he kind of paused it. He was very, like, kind of… The mood in the room was like, very, like, happy and celebratory. And, like, this is great and so exciting. And then his mood kind of changed. Like, he was like… He kind of paused and was kept, like, looking at one spot and was like, “I’m gonna get the doctor.” And I was like…
Dr. Fox: Well, that’s never good.
Nina: Yeah. Exactly.
Dr. Fox: Yeah. We’ll call the doctor, that can’t be good.
Nina: And I was like, “Okay,” And I was, like, telling myself, like… You know, I started to get anxious, but I’m like, “Don’t freak out. Don’t freak out.” And he got not the doctor that I was seeing but like a doctor, who came in and looked. And they basically said what they were seeing was that the baby’s organs, like, were developing outside the baby’s body. That’s all they could see at 12 weeks. And they said it’s concerning, but we’re not exactly sure what it is. Yeah. And they basically gave me three scenarios. So the first was that sometimes that’s, and correct me if I’m wrong, but I think that’s how the baby’s organs, like, normally developed sort of outside of then they go back inside.
Dr. Fox: Some of the organs, like the intestines. There’s a point in development where they’re outside the baby’s belly buttons, sort of within the umbilical cord, and then they retract and come back into the belly. So if you happen to catch it at that point of gestation, you’ll see the intestines outside develop, like, sticking out of the belly button. And that is a normal finding, usually not at 12 weeks, but the normal finding a little bit earlier. I mean, these are the organs we’re talking about mostly the intestines. I mean, I happen to know your stories. It’s not like the heart or the bladder or the brain or something like that. Okay, go on. And so that was option one that is normal…
Nina: Yeah, that was option one.
Dr. Fox: Yeah, normal, but a little bit delayed, which is not a big deal but okay.
Nina: Right. Exactly. It’s like we’ll just monitor that. The second was gastroschisis. Is that how you say it?
Dr. Fox: Gastroschisis but close enough. That’s a pretty bad word that would only come up on a spelling bee.
Nina: Exactly. Gastroschisis. Yeah, that one, which is, again… Like, it’s definitely more serious than the first and it will require I think surgery when the baby is born. But, you know, baby’s in the NICU for a few weeks. You know, we definitely have to move to a high-risk practice, but it’s manageable.
Dr. Fox: That’s what this is, like, essentially, a hole in the baby’s belly near the belly button, and the intestines stick out because they just sort of fall out that hole. But even though it’s kind of freaky, usually it’s correctable, surgically. They just sort of push everything back in and sew up the hole. It’s a little more complicated than that but that’s the gist of it. And usually, that’s all there is. It’s just like a weird thing that happens. And so yeah, that’s sort of like the middle option. Not good like the one where it’s nothing but not as bad as the next one, which is what you’re gonna tell us.
Nina: Yeah, and I think also with the second one, it was not… Typically didn’t indicate other potential issues.
Dr. Fox: It’s usually isolated. Just that alone.
Nina: It’s like, okay, that’s it. Yeah. And then the third one was a defect called an Omphalocele, which is when the baby’s organs or those organs, the intestinal organs, like, just grow in this sack outside the body.
Dr. Fox: Right. And they’d never come back in basically.
Nina: Right.
Dr. Fox: And that’s not good…
Nina: And that would require a ton of surgery. I didn’t even get into so many details, but it was just a… Message was like that would be a lot and really bad.
Dr. Fox: Yeah, I mean, it’s like the second one, in that it requires surgery to fix. But the difference is, it’s much more likely to have other things going on, problems with the brain, problems with the heart genetic problems, meaning it’s frequently not the only thing. It’s frequently like a sign of a more global problem. So you got that diagnosis, and tell us about that day.
Nina: In the moment, I had the presence of mind to ask with the… Like, you know, when it was that first scan, and it was the three options, and we’re not sure which one yet to ask, like, with the Omphalocele, do people choose to terminate pregnancies because of this? And the doctor said, “Yes. You know, it’s not everyone, but people do.” So I think that was the scariest moment when I realized that just, again, showed how serious it was. And yeah, I just remember feeling like it was like all that happiness and excitement just, like, drained. And I just was like… I almost felt, like, suffocated. Like, I was like… it just felt so scary but then I kind of quickly was like, “All right, well, that’s the worst-case scenario and I’m not gonna think that way because what’s the point of focusing on the worst case.” They just gave us three options. And so I was, you know, really scared, frustrated. I wasn’t as, like, elated as I had been so far, but I was like, “All right, I’m gonna try to, yeah, just like take things as they come.” And I kind of was like expecting the second option because I was like, “All right, I’m probably not lucky enough to get off scot-free with just like the first, like, it’s nothing but, like, what are the chances that it’s a super-serious thing?” Like, it’s probably that and all right, so much Ohio’s practice and that’s what it is. But it was definitely like a very anxious week. So then, when they said to come back a week later, we go back a week later, and they confirmed it was the Omphalocele. And it’s funny because I was telling them about that feeling of being suffocated. And I actually can’t remember if that feeling was in that first appointment or that second. Yeah, like this, like, horrible panic. And I remember just, like, sobbing, and it probably was the second appointment.
Dr. Fox: Did you know in your sort of gut right away that you were gonna terminate the pregnancy, or did it take you several weeks to really grapple with that?
Nina: No, I didn’t know right away. It just felt like this horrible… Like, there was no good choice. It felt like everything is awful. Like, no matter what we do, it’s awful. So, that’s probably why I felt so suffocated. Like, there’s no good option here. Like, it all just is terrible. And I remember they called my doctor, like, the OB I was seeing. And that second scan was that Greenwich. And then he said, “Oh, well, you know, come to my office. I’ll come take a look at it, too.” And at first, I was like, “Oh, that’s so nice of him, you know, that he’s taking, you know, like, last minute, just willing to see me. And I thought he was gonna try to calm me down and try to get… So we ran there. What became really clear was that he was very clinically excited. Like, he was a typical OB. He wasn’t high-risk. And I think he was very…It was, like, obvious. My father is a physician. It’s like, I’ve seen that kind of clinical excitement when my dad’s like, “Whoa, I saw this… “You know, like, my dad’s an infectious disease physician. So, you know, they see all these like, crazy things.
Dr. Fox: Yeah, okay, I’ve got to see malaria today.
Nina: Yeah, exactly.
Dr. Fox: Not so great if you have malaria, but…
Nina: Right. Correct. And, like, yeah, you know, I think my dad was much more appropriate with the, you know, bedside manner, his amazing bedside manner, and would just maybe tell other people but this doctor was like… And yeah, he just wanted to see it. And he didn’t really have any words of comfort, or he didn’t, like, have any second opinion or anything. He just wanted to look at it, which was the worst feeling. I mean, it was horrible that it was like a freak show. Like, he just wanted, you know, to look at it.
Dr. Fox: Yeah. Now you’re a spectacle on top of all this.
Nina: Totally. And I was like… Yeah, it was awful. I remember calling my parents on the way home. And, you know, I just said… They were waiting for my call and I just started crying. And I said, “I don’t know why this is happening to me.”
Dr. Fox: Oh, you poor thing. Especially after working so hard and trying so hard and for so long to get pregnant. I mean, it’s awful. It’s awful in all circumstances, obviously. But just, you know, for your particular situation, it’s just compounded. Oh, God.
Nina: Yeah. And I think that’s the injustice of it felt… I was so angry. I was like, so unfair, like, come on. Like, you know, I’ve already been like… You know, going through IVF, it wasn’t a picnic. So like, come on, like, give me something here. And it was just, like, yeah, I was so angry. So then it was a week of, you know, we had to make this decision. And it was a week of just talking to different specialists, like, hearing all these different, like, percentages, and statistics and all these things thrown at me. And it’s like, it’s so hard. Like, I’m like, “How do I make this decision?” It was awful. And I just wanted to know… I wish there was more certainty. Like, I wanted it to be… It sounds terrible, but it’s like, I wanted it to be fatal. I wanted them to be like, you know, God forbid, the baby has died and now we need to take the baby out or the baby will not survive. Like, it’s like, no, it’s just this super harrowing prognosis. Like, what they were telling me was that the baby… The other thing was that it was a giant Omphalocele, which I guess just means it’s extra big. I don’t know.
Dr. Fox: Yeah, no, I mean, there’s just gradations of it.
Nina: Right. Right.
Dr.Fox: Yeah. And it is hard. I mean, because, no one can tell anyone what exactly is gonna happen unless, you know, there are some diagnoses or some genetic conditions where it’s pretty uniformly fatal. And so, okay, I mean, it’s horrible, but at least people have some certainty. We as humans have a much easier time making decisions under certain situations, good, or bad. But uncertainty is like you said, like, what do you do with something that says, “All right, there’s a 40% chance of something really bad. You’re like, “Well, what do I do with that? Like, what does that mean?” Like, okay, you know, you’re not like at a casino, you know, playing the odds, where you can do it 100 times in a row and use the numbers. You can’t do that. You only get one chance here to make this decision and it’s really tough. It’s like you’re gambling with one bet. And it’s hard. Who else did you turn to, not for medical device but for just, like you said, you’re an open book and your support because now, you know, your group is now narrowing, right? There’s not a lot of people that you know are going through this. So who did you turn to besides your parents?
Nina: So I’m Jewish and for like a minute I thought about, like, should I talk to a rabbi? And then we decided, like, no, we were too scared, because we didn’t know what a rabbi would say.
Dr. Fox: You know, rabbis and doctors are alike. We can go in many different directions.
Nina: Yeah. Exactly. And we felt like there was already enough, like, stress and pressure with this. We didn’t need, like, an extra opinion, in a way. I don’t know. Like, I was afraid… I think at that point, we were leaning towards termination. And I was like, what if a rabbi tells me that, like, you know, the Jewish perspective on this is, like, you should not have an abortion. And I didn’t know much about abortion. It felt like a really foreign concept to me. I knew that, like, religious Christians are, like, typically very against it but I didn’t really know what the Jewish perspective on it was, which is another reason I feel really strongly about talking about it, triggering the Jewish community so that it becomes more of something people talk about. I mean, we’re really relying on the medical community, I think, to help us make this decision, or give us the information to make this decision. I was told to get a CVS.
Dr. Fox: Sure. Just to make sure the genetics are normal or abnormal, help you sort of know which way it might be leaning. But again, it’s just leaning. You know, if it’s abnormal, it clearly leans you in the bad direction. And if it’s normal, it leans you in the good direction, but you still have this whole surgical problem, maybe other issues and stuff you can’t pick up on CVS. Again, it makes your odds better or worse. It doesn’t give you a yes or no. Did you have going into pregnancy, just in your life, strong feelings about abortion one way or another beforehand? I mean, obviously, they’re sort of esoteric feelings, because it’s not practical. But were you someone who was, you know, very, you know, like, rallying pro-choice or, sort of, you know, pro-life beforehand? Did you have thoughts about that?
Nina: You know, when I thought about it, I was pro-choice because I was like, you know, woman’s body or choice, like, you know, that should be something a woman gets to decide, I don’t think I thought about it too deeply. You know, it hadn’t been a situation I was ever faced with. So I think in theory, I was pro-choice, but I didn’t really think about it that deeply.
Dr. Fox: When you were grappling with the decision, what was making you fall out potentially on the, we’re gonna continue the pregnancy side? Is it, you now had some reservations about the idea of terminating a pregnancy, or was it just because you weren’t certain about the outcome, and this was such a highly desired pregnancy? I mean, was it the termination, or was it the baby?
Nina: It’s a really good question. I think part of it was, you know, I tried really hard not to Google. For the most part, I didn’t but, like, there were some times late at night, where I’m like, “I can’t help myself. I just need to Google.” And I do remember seeing, like, people who, you know, had a prenatal diagnosis of Omphalocele, or, you know, another kind of really intense diagnosis, and the doctors were like, this is, you know, very intense and had, you know, maybe there was even pressure to terminate, and they were like, “No, I will never terminate.” They’re like, and either sometimes a story, you hear these, like miracle stories, like, “And the baby was totally fine.” And I’m like, “Well, that’s not helpful.” Or, it’s not that the baby was fine but the baby, you know, okay, we had to go through a lot but, like, here’s a picture of my six-year-old today and, like, they’re thriving. They’re doing great. So, that really messed with my head. It was really hard to see those because I was like, “Okay, so does this…? Like, should I…? Because I feel like there’s two messages there. It’s either, like, ignore the doctors. Like, you know, you’d have to, like, trust yourself or have faith, right? It’s more about, like, faith-based. Like, have faith in your baby or have faith that this will be okay or it’s like, even if you’re gonna trust the doctor, it’s, like, you know, I guess that’s more on the side of not terminating because the idea of termination or abortion is wrong, then, like, we’ll just… You know, every life is precious and, you know, have this baby because like you were meant to have this baby and all that. So I think that was probably both.
Dr. Fox: I think that’s fair. I would expect it to be both because again, like you said, most of us when we think about termination, it’s sort of like a concept that exists elsewhere and other people. But when you’re deciding for yourself, it’s so much more complicated and it sort of brings to the front all these feelings, and emotions, and thoughts that you’d never bring up otherwise. And again, because, you know, like. we were talking about offline before, you know, people think about terminations, and this sort of very quickly thing, all right, someone gets pregnant, they don’t wanna be pregnant and they’re gonna have an abortion, you know, that’s how they’re gonna “take care of it.” And okay, obviously, that is it. I mean, that is a situation that happens and that’s something to talk about but that’s not what we’re talking about here. We’re talking about someone who’s, like, literally spending a year of her life doing everything she can to get pregnant. And this is the most exciting thing in the world to you. And now, the whole story has changed, like, in a blink of an eye. And now what? And that’s a much different scenario. And it’s hard for people to wrap their heads around it unless you’re in it, unless you’re feeling it yourself, and you’re grappling with it. And so, it’s just a totally different scenario, which is why we need to talk about these things and talk about them out loud, so people who themselves are going through it can understand that these are normal emotions and normal struggles in this situation. And for everyone else who’s fortunately not gonna be put in this situation, they can have some small glimpse of understanding what people might be going through when they’re making these decisions. You ultimately decided to end the pregnancy. How was it afterwards? Did you have a sense of relief or a sense of tremendous grief?
Nina: I think both as well. So, I remember like before…That period where we decided we were gonna have the abortion and then until we had it was horrible because I felt like I was still carrying this baby. And I just was like… It was just a horrible feeling. And then after it was over, I definitely felt relief, like, well, we made the decision, it happened, it’s past that. At least the decision piece is past us. The baby is no longer alive. And I think, you know, it was definitely interesting because, again, with my husband, obviously he was heartbroken along with me. But he’s told me that… We’ve obviously discussed it a lot since then and he said, You know, I didn’t really think of it as a baby. I think of it as, like, the potential for a baby. And I questioned him. I said, like, “Do you think that you naturally think of it that way, or is that a way to, like, kind of protect yourself? Because if you go there, that’s much harder.” And he’s like, “Yeah, no, you’re right. I’m probably protecting myself. It’s probably a coping mechanism.” But he also has pointed out, he’s like, “Yeah, but also the baby wasn’t inside me.” He’s like, “It was easier for me…” And again, like as I said, that, you know, kind of unintentionally mindful, he wasn’t having these visions of the future, right? As soon as I got pregnant, it was like, I was plotting out the whole next year, probably the baby’s whole life but, like, you know… Oh, and then when it’s… You know, Passover, the baby will be this old and, you know, it’s like… And he wasn’t thinking that way. He’s like, “This is great. We’re pregnant.” Awesome. You know, it wasn’t like… So I think for him, it was…
Dr. Fox: That’s terribly annoying, isn’t it for you?
Nina: Yeah. Very. And it was awful. Like, it was very isolating because it made me feel like, you know, although he was grieving too was very different. And so I felt like it… Yeah, it just felt very different for each of us.
Dr. Fox: This is the burden you carry. I mean, it’s gonna fall on your shoulders. And obviously, for him, it’s a tremendous loss as well but it’s just different. It just is. I mean, it is, that’s the reality of it and you’re gonna have a different… You know, you’re gonna be carrying around different luggage than he is over this. There’s no question about it, as it should be. I mean, that’s not abnormal or unusual. That’s what one would expect. You did decide to be open about it. I mean, you spoke with others. You wrote publicly about this. What made you decide to do that initially? I know that we talked now about telling your story, but it’s years later, at the time, were you right away, like, you know, this is who I am. I’ve been open I have to do this or was that a big decision to say, “All right, we’re gonna let people know what happened.
Nina: So many people knew I was pregnant. So there was a necessity in telling people I’m no longer pregnant.
Dr. Fox: You could easily say, you know, we lost the pregnancy and, you know, 99 out of 100 people are gonna assume you miscarried.
Nina: Right. Right. And so, it’s funny because my husband was frustrated that we told somebody. He’s like, “Why did we tell so many people? Now we have to tell them.” And I was like, “Well, I think it’s helpful to me because then otherwise it’s like, the whole thing is you’re going through this quietly. It’s like I wanted that support the same way people were so happy for me then, now people can be my support going through this. And I was very open about, like, what actually happened that it wasn’t just a miscarriage because, again, I felt strongly that… At that point, it wasn’t about other people should know this. It was more like I need you to know what I’m going through so you can support me. You know, it’s just different when it’s a miscarriage. Like, it’s awful. Miscarriage is horrible. It’s just different emotions. It’s a different kind of grief. We had spoken to some rabbis when we were going through IVF because there were certain decisions we had to make when signing the papers, you know, what to do with the embryos? You know, all those scenarios. I did email the rabbis to let them know I’m no longer pregnant. And with them, I think they were the only ones that I was like, kind of, you know, vague. Yeah, I was like, yeah, and just kind of had that fear. And then when they emailed back, I mean they were so, like, wonderful and supportive, there was something in me that it was, I just kind of want them to know. I don’t know why, but I want them to know what the actual details were. And I shared them and then one of the rabbis called me and she was so incredible. And she kind of said something that has a little bit become my mantra after that in processing it, she’s like, “Peninah, this wasn’t a choice. It was a tragedy.” To have that perspective, from like that rabbinic figure, it’s such a powerful thing to say it kind of takes away some of the complicated… I mean, it didn’t take it away. But I don’t know, to have that perspective…
Dr: Fox: It lessens the guilt. I mean there’s… And listen, people who miscarry have guilt. I mean, they shouldn’t, obviously, but they do. And guilt is so much a part of the grief. It’s so much a part of it. And particularly, obviously, if you terminate a pregnancy and to have someone, you know, either remove or try to remove some of that guilt, particularly if it’s coming from a figure who you would normally associate with giving you guilt, right, you know, religion, right, you know, God, right? And so why do people feel guilty? That’s such a huge portion of it. Like, did I do the right thing? You know, what this cosmic God? And so if that figure in your life, you know, says something to say, “No, like, you don’t need to have guilt over this,” that is tremendously comforting. Obviously. I think that is a very comforting thing to say, particularly, again, from a rabbinic figure, as opposed… I mean, it’s comforting from anybody but particularly someone who that’s the world they live in. I mean, that’s all they do is talk about guilt all the time. That is very powerful. Was there anyone who, unfortunately, was the opposite of supportive, either intentionally or unintentionally with their comments to you or actions to you?
Nina: There were some people, and I think what was so harmful about that was it created shame around it. When I kind of was like, “There shouldn’t be shame here,” you know, there was some people just encouraging me to maybe not share the details of it. Maybe, you know, let people assume this was a miscarriage. And that really upset me. It certainly made me feel guilty but then also angry. Like, that’s, you know.
Dr. Fox: Yeah, you think they were trying to protect you from someone else or trying to protect the other person?
Nina: They were totally trying to protect me from other people. They were worried that, oh, other people might judge you for this. And that’s a hard thing. Abortion is such a charged issue in our culture and our society. And it always gives me a little bit of anxiety to talk about it publicly because it’s like, what are people thinking? Are people judging? I remember being… We were around some friends who I think they knew what I had gone through, but obviously forgot. And they basically, like, described this exact scenario. They’re like, “Yeah, if I ever got like a prenatal diagnosis, I can never have an abortion.” And, like, it was such a gut punch. And I was like, “Oh, my God.” You know, people are gonna have different… You know, honestly, I actually saw… I was like, looking through the podcast, I can remember if it was “High Risk Birth Stories” or the “Healthful Woman,” and I think you interviewed someone, a woman who was pregnant with a baby who had Omphalocele and had the baby.
Dr. Fox: Yeah. I didn’t wanna bring that up but I was thinking about that. We had…
Nina: Yeah, no, no. I saw it, and I was like, “Oh, my…” Even now, right, this is how many years later and I was like, “Oh, my God. Oh, my God.” Like, I started to, like, panic a little bit. And just the idea of, like… It was a reminder that there are people who do not terminate, right, and that it was a choice, that it was a decision. And I actually went through my emails from the time, like, when we were making the decision because, like, I just had a lot of emails from, like, doctors and friends, and I had to remind myself of the details to, like, help me feel better that, like, right, right, we made this decision based on this information. You know, I mean, I certainly still think about it, it’s still kind of like something I can still wrestle with sometimes.
Dr. Fox: Nina, thank you so much for agreeing to tell your story. I know it’s on the one hand, cathartic but it also does bring up, you know, difficult emotions and sad emotions and, you know, it’s hard at the same time. But, like, we we’re talking about, it’s so important for people to hear your story, both those who might go through something like this or have gone through something like this, and for others who, fortunately, never will just understand a little bit better, you know, just a slight insight into what someone might be going through. And so, I really do appreciate it. As we said earlier, you’re coming on again next week, because I wanna give you an opportunity to tell the rest of your story, which includes, fortunately, a couple of happy births and some other challenges. But, you know, I don’t want this to all be about your first pregnancy. I want you to have an opportunity to tell the rest that. So we’re gonna do that next week. But thank you so much for agreeing to do this.
Nina: Thanks so much for having me. Really appreciate it.
Dr. Fox: Thank you for listening to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman Podcast.” If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com and click the link for sharing your story. You can also email us directly at hrbs@highriskbirthstories.com. If you liked today’s podcast, please be sure to check out our “Healthful Woman Podcast” as well, where I speak to the leaders in the field to help you learn more about women’s health, pregnancy, and wellness Have a great day.
The information discussed in “High Risk Birth Stories” is intended for information and entertainment only and does not replace medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on “High Risk Birth Stories” have given their permission for us to share their personal health information.