On this episode of High Risk Birth Stories, Megan Hofbauer tells her story of choosing to terminate a pregnancy after genetic testing indicated her baby had trisomy 18. Megan explains that “it’s important to put a name and a story behind terminating for medical reasons” and shares her firsthand experience to clear up common misconceptions about this controversial subject.
“The Decision to Terminate a Pregnancy” – with Megan Hofbauer
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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 of pregnancy, fertility, and childbirth. Megan Hofbauer, thank you so much for coming on the podcast to tell your story. How are you doing today?
Megan: I’m good. Thanks for having me.
Dr. Fox: So you and I both have a little bit of trepidation about this, obviously. You know, the podcast isn’t really typically talking about, you know, pregnancies that end, people that end their pregnancies and terminate. But we spoke several times already offline in preparation of this and you and I both felt that it was really important. And I’m curious because this is something that you were doing and telling your story before you and I met.
What is the reason that you feel it’s important to tell your story and that you’re not just willing, like I’m twisting your arm willing, but that you were, I guess, I don’t want to say eager to come on and talk about it, but did you thought it was important to come onto the podcast and tell your story?
Megan: I think there’s a couple of reasons. I think the first one is that it’s cathartic for me to talk about it. And the second thing is that I feel like it’s really important to put a name and a story behind terminating for medical reasons because there’s a lot of misconceptions out there and a lot of women feel really alone. And so I hope that by sharing my story, then I can reach that one person that needs to know that they’re not the only one that did this, that made this choice.
Dr. Fox: You know, both of those reasons that you gave are the same reasons I would say most women give to tell their story on the podcast, whatever the outcome is. Number one, it’s cathartic to tell your story again, whether the ending is happy, sad, traumatic, painful, whatever it might be. There’s a whole host of emotions that can happen after a pregnancy. There is something therapeutic about talking about it because no matter what happens with a pregnancy, a birth, a loss, a termination, it changes you.
It changes you in one way or another. For better, or for worse, something and to talk about it is helpful on a personal level. But every single person has said the same thing, that there is somebody out there who feels like they’re the only one to whom this has happened. Again, it doesn’t have to be a disaster. Any outcome in pregnancy, people feel alone in a certain sense. It may not be as strong if they had a really good outcome. They don’t think about it that way, but certainly, if there’s anything different, and hearing other people tell stories, even if it’s not exactly the same, just the same themes is really helpful. I hear from listeners who tell me how helpful it was for them. So I think you really just hit it on the head for why this is important and why I feel it’s important for you to tell your story on the podcast.
Megan: Pregnancy loss, in general, is a lot to deal with and it changes you. There’s like, you know, the before and then the after. Like it’s like two different people. And then when you add this extra layer of having to make a difficult decision during your pregnancy, it’s a whole nother layer of grieving, but it’s a whole nother layer of feeling alone because you don’t always feel like everyone can relate because you know, a lot of the support groups are for pregnancy and infant loss.
And while you fit in that group, you don’t necessarily fit in completely or feel like you can share your whole story without feeling some kind of judgment. And so I hope that by sharing my story, that I can kind of create an opening for other women and other families to be able to find a safe space to talk about their decision.
Dr. Fox: I think that so much of that is because…I would like to say the word discussion, although it’s rarely a discussion, it’s usually an argument…about abortion in this country is so heated and so passionate that you almost can’t speak about it with anybody, no matter what your position is for fear that it’s going to end a relationship. That it’s going to end in a fight, it’s going to end in something that’s ugly. And again, that’s on both sides. However, you feel about abortion in general at baseline.
And so people don’t want to talk about it unless they’re intentionally trying to talk about it to like, convince them that their side of the coin, so to speak is the “right one.” Again, that’s in quotes. And it’s also the same reason why, you know, I don’t want to talk about abortion, but I do because I don’t want this. This isn’t a political podcast. We’re not here to talk politics or laws or what’s right and what’s wrong in terms of how the country should be and how people should act and what people should do.
This is about a human being who went through something very moving in terms of, you know, your life and your experience. And to hear it in a personal way, rather than this abstract concept, just to help maybe make the discussion on a higher level potentially that it’s not just about the fight, but it’s really about these are people. And we have to figure out how to get through this as a society together. And without hearing these stories, I fear that people, you know, they yell and scream about it without any context.
Megan: Right. And I think a lot of times when people reference stories, it’s anecdotal. It’s like “I heard from someone,” or “My sister’s friend’s, so-and-so told me something,” and they’re not necessarily hearing or experiencing the difficult decision in the pregnancy and everything that goes into it. They’re not hearing it firsthand. They’re not experiencing it firsthand. And so I think I’ve found that oftentimes when I do tell my story, then it really gets people thinking beyond the surface of the topic, you know, of like, “Yes, I would.” Or “No, I wouldn’t.”
It’s more about reaching them and have it helping them understand that this is…like, we need to have compassion for women that are having to be put in a decision to make a medical decision about their very wanted pregnancy. You know, getting across that these are wanted pregnancies. It’s not like we’re just changing our mind. We had hopes and dreams and we dreamt of ballet classes and soccer games and graduation and names and picking out furniture. And this isn’t something that we want to do. It’s something that we feel like we need to for our child and for ourselves.
Dr. Fox: That’s amazing. I mean, you’re totally right. And I want to give you a chance to tell your story. So just to set the stage of where we are, we’re talking about your pregnancy in 2016, correct?
Dr. Fox: So this is five years ago, and tell our listeners, at the time, I guess, right either at the beginning of this pregnancy or right before this pregnancy, you know, where were you in life? You know, what was your story? What was your family at that time coming into the pregnancy?
Megan: So in the summer of 2016, my husband and I had two children, both boys aged five and two. And we were living in a townhouse in the suburbs of Chicago and, you know, just living our life, getting ready for kindergarten for our oldest. We knew we wanted to have three or four kids and we’d been spacing them out about three years. And so we had discussed earlier in the year to try for a third. And so, I mean, it took a few months, like everyone usually. And so in July of 2016, I got a pregnancy test, and it was positive. I think it was the first time I’d actually cried about a pregnancy, like finding out that I was pregnant.
Dr. Fox: Why do you think that was?
Megan: In my mind, if it was a girl, this was it. We weren’t going to have anymore. And if it was boy, oh gosh, we’re going to try for number four because, you know, we wanted at least one of each and we already had two boys. And so I know that they say that like women’s intuition or a mother’s intuition, but I don’t know if I felt like, “Yes, this is going to be a girl.” And so I got emotional. And I’m not an emotional person. I don’t cry very often. So, but for just some reason I just felt really emotional over being pregnant.
Dr. Fox: How old were you at the time?
Megan: At the time of receiving the pregnancy test or getting the positive test, I was 34. And then a couple of weeks later I turned 35.
Dr. Fox: So you crossed that advanced maternal age line. Got it. All right.
Megan: Yes. So I went to my first appointment in August of 2016, and I remember them telling me that I was of an advanced maternal age. And I thought it was the biggest joke. I laughed really hard. I remember going home and joking about it to everyone because, you know, they’re telling me that I’m old, which I know that’s not what it is but like, you know, it just made me laugh. And when I Googled it and found out that they used to call it a geriatric pregnancy and that made me laugh even more.
At that point, I had friends in their 40s having kids. And so to me, it just was funny. But at that appointment, they mentioned genetic testing. And the only reason why I opted into it was because I could find out the gender early.
Dr. Fox: What did you do with your boys? Did you not do any screening genetic-wise?
Megan: No. Nothing.
Dr. Fox: By choice or it wasn’t offered?
Megan: It wasn’t offered. And they were both pretty normal pregnancies other than being nauseous throughout most of those pregnancies, they were fairly normal. They were both C-sections. I’d had something going on with my hip during my first pregnancy. And we didn’t know what it was at the time, but it was the point where like at seven months pregnant, I was having trouble walking. So that’s why we opted for a C-section. And then, of course, that was offered at the second pregnancy. And I was like, yes.
Dr. Fox: Another one of those, please.
Megan: Yeah. I mean, it just, having a scheduled C-section, I don’t know, there’s something like kind of calm and peaceful about it. You know, you go in at a scheduled time and, you know. I don’t know. Like for me, like, waiting to go into labor felt really out of control. And so I, you know, opted for it. But other than that, they were normal pregnancies. My oldest is deaf in one ear but there was no, like, we didn’t do any genetic testing on him. There was nothing in our family history. And so there was no need for any genetic testing.
Dr. Fox: And so for this pregnancy in 2016, they offered it as a “Hey, you’re going to be 35 soon. We can do this and it’s a blood test and you can find out if it’s a boy or girl, and at the same time, we’ll do genetic testing.” Did you have any concerns even? Was it even crossing your mind that potentially you might come back abnormal? Or were you just like, “Whatever, it’s just a blood test.”?
Megan: No. They said like, you know, “Do you want to have this genetic testing?” But there was no conversation beyond, “Do you want to have this genetic testing? And, oh, by the way, you can find out the gender.” It wasn’t like, “These are the things that could come up.” Or “This is why we do the genetic testing.” I mean, I guess in the back of my mind, I knew why they did it, but I didn’t really think beyond, like, I can find out if it’s a boy or a girl. And if they hadn’t said you can find out the gender, I would have passed…
Dr. Fox: Interesting.
Megan: … on the testing.
Dr. Fox: Got it.
Megan: Because in my mind I still thought it was funny that I was being told that it was advanced maternal age. I didn’t know the seriousness. I think that women who have never experienced anything difficult in their pregnancy, whether it’s having to terminate or it’s having a baby that is, you know, struggling during a pregnancy or whatever it is, it’s almost like you’re naive to the possibilities that it could be something bad because nobody talks about it.
I didn’t know that anyone… Nobody around me talked about losing a baby or having to make any kind of medical decisions during a pregnancy or having genetics. I mean, nobody talked about it and people still don’t really talk about it. So I just didn’t know. In my world, I had nothing to reference, you know.
Dr. Fox: I was going to ask you if prior to that point, either at the beginning of this pregnancy or at any time in the other two pregnancies, was there any point when you walked into a visit, an appointment with the thought, “What would I do if something were abnormal?” Meaning sometimes it happens when people come for like, an anatomy ultrasound to look at the baby head to toe and they sort of have in the back of their mind, “Well, what would I do if they found something abnormal?”
Or if you know, you come in and you’re 15 weeks and you’re bleeding, you’re like, “What would I do if I found out there’s an abnormality?” Did you ever have those like “What if?” moments earlier in pregnancy?
Megan: I didn’t.
Dr. Fox: Wow. That’s great.
Megan: Well, I feel like though too, like if your pregnancy is kind of like moving along, I mean, I was nauseous enough that I was on Zofran for parts of both of the pregnancies and then for that third one also. But other than that, there was nothing wrong with the baby. I think for my oldest, who’s now 10, I did have to do stress tests like the last two weeks of my pregnancy. But that was because my blood pressure was a little bit elevated. But that was about me. It wasn’t about…you know what I mean? Like, it felt like it was still about something wrong with me. So I did and they did not have me go and do my 20-week anatomy scan at an MFM. It was at my OB’s office.
Dr. Fox: Got it. So it was like, part of prenatal care.
Megan: Yeah, exactly.
Dr. Fox: So with this pregnancy in 2016, you did the test, and what happened with the results?
Megan: Well, after that appointment, it was too early to do the genetic testing. So they told me I had to wait until my next one, but we had heard and seen the baby’s heartbeat. So Labor Day weekend, we went and visited family out of state. And we announced that we were pregnant because why wouldn’t we, this is our third pregnancy. We’ve never had any problems. We saw that heartbeat. Like I thought I was safe.
And so then, like the day after I got home, I went to my next OB appointment and did the blood work. And it took a week I think for the test to come back. And that morning it was a Wednesday. I remember waking up and I had been going to… For my oldest, our hospital had like a program for new moms, where like every Wednesday you could go and there were nurses that did it and there would be different speakers, and everyone would bring their babies. And I had met moms there.
And so I remember going on Facebook that morning, and one of my friends had lost her baby. Like she had been pregnant with her third and she had lost the baby and they were having the funeral that day. And so that’s kind of where my mind was already that morning. And then the doctor called, and maybe other people don’t think this, but for me, it’s the nurse that calls or the reception. It’s never the doctor. The doctor doesn’t call.
So when I heard his name, I knew something was wrong. And I was at home taking care of my two-year-old. My five-year-old was at school. My husband was at work, and they said that there was a 78% chance that the baby had trisomy 18, which I’d never heard of. And they talked about some of the anomalies, you know, and they told me we were having a girl, but at this point, the next step was going to MFM. It wasn’t really talked further about.
I mean, the doctor was great, and he gave me the basics, which I think probably was the best thing for me because I couldn’t take it all in because my world was kind of shattering at that point. You know, he said 78% chance of trisomy 18. I didn’t like, think, oh, 22% chance that she doesn’t. I only heard the 78%. So I called my husband and made him come home because I just didn’t think I was even going to be able to drive to pick up our kindergartner from school. Like, everything had just felt really heavy.
And like, we were already thinking about, dreaming about all of the things that we were going to do with three kids, you know? And so we talked briefly, my husband and I about it, but mostly he, you know, stepped up as the main caregiver at that point because I was still trying to figure everything out. So I’m sure I Googled a lot those first couple of days, which is really like, bad because you can fall down a rabbit hole on Google. But I wanted to know more about trisomy 18. Like I wanted to know what I was in for if that’s what it was.
Dr. Fox: How long did you have to wait from hearing that news to seeing the MFM? Was it a couple of days or a couple of weeks?
Megan: It was a couple of days. I was able to get in for that Friday. So two days later.
Dr. Fox: Was it for like, an ultrasound and consultation, or did they talk about even doing testing at that time?
Megan: Yes. It was an ultrasound and we talked about testing what my options were, which was a CVS test or an amnio. And we talked about the pros and cons, about that kind of stuff and I ended up opting for the amnio. But in that ultrasound, they found a couple of markers for trisomy 18.
Dr. Fox: I’m curious why you chose an amnio instead of a CVS because the amnio, you have to wait and the CVS you would not have had to wait.
Megan: So at the time I said that it was because there was slightly less of a risk of something happening to the baby with the amnio versus the CVS. But it’s really a small difference. It’s not something that really should have affected my decision. I think by picking the CVS, it would have been like a way of me admitting that there was no hope. Like, I think I felt like by giving myself time and saying that the amnio is less risky, that it was me trying to like, convince myself that there was still that 22% chance that she didn’t have it. And that I needed to take the less risky option in order to make sure that it wasn’t, you know, that decision that made me miscarry or something. I don’t know. I don’t know if that makes sense.
Dr. Fox: No, it makes a lot of sense. Had you even thought about it or talked about it with Adam, what you would have done if the results were abnormal? Meaning were you guys walking in saying, oh…
Dr. Fox: You didn’t have a plan so to speak?
Dr. Fox: I mean, sometimes if people have a plan, if they say, “Listen, I know 1000% I’m going to terminate it. The results are abnormal.” They’ll do the CVS because they want to know as soon as possible. And if other people say, “I know 1000%, I’m not going to terminate no matter what,” they either won’t do either test or they’ll say, ‘Listen, what’s the difference. We’ll wait and do an amnio potentially.” But if you don’t know, and that’s not really on the radar, yeah, you sort of pick one or the other. I personally don’t counsel people that there’s a difference in risk between amnio and CVS.
There are those that do. And I think most of the newer data shows there isn’t a difference but there are different tests. And the CVS, there is the shock element. Some people, when they hear the news, they’re just not ready at that time to have, you know, a needle stuck in their belly and get definitive results. And some people just want to process a little bit longer, like you said, for whatever reason. And that’s fine. I mean, again, there’s an upside and downside to both of those tests logistically.
Megan: I was at the appointment by myself because my husband was working a contract job so he couldn’t take a day off. Otherwise, it would have been unpaid, and we just couldn’t afford it at the time. And so I think I needed more time to think about it. There had been no discussion yet at that point with my OB or with MFM about what my options were.
Dr. Fox: You mean, if it were abnormal, if it were confirmed,
Megan: I didn’t know what my options were at that point. I wasn’t even thinking about that. I was just at that point, trying to understand what trisomy 18 is and what that meant.
Dr. Fox: Did the MFM do that for you say, “Hey, trisomy 18 is really bad.” Or was it just very peripheral because they didn’t know definitively what was going on?
Megan: I think most of what I learned about it was online through like, Google searches.
Dr. Fox: Oh, that’s great.
Megan: I know. It’s not great.
Dr. Fox: Okay.
Megan: Then when we were doing the ultrasound, you know, the doctor did come in and point out a few things on the ultrasound that were markers for trisomy 18. And so at that…that was when I started to really lose hope. Like, I think I’d been kind of like slightly hoping that something that, you know, we would be the exception. And then once that ultrasound happened, then I think I was just trying to like, fake it so that I could get through the next day.
And then that next day I could get through the next day, you know. And everyone kept saying like, “You have to hold that hope. You have to hold that hope.” And so, you know, I wanted to have the hope, so I tried to force it.
Dr. Fox: So ultimately, I mean, I guess three or four weeks passes before you come back to check again and do an amnio, right?
Megan: Yes. But between the two, between the two appointments, I went to see another OB-GYN, like, or another OB. The practice that I went to or that I still go to is very big. And the policy is that during your pregnancy, you see as many of the physicians as you can so that when you do go into labor at the end of your pregnancy, you’ve already met all of the doctors. And this was a new practice for me because our insurance had changed between our second and third pregnancies.
So this was a new practice. So I never met any of these doctors. So I go in to see this new doctor, and this is the beginning of October at this point. And she tells me that there’s a clinic in the city and that I could go there and take care of everything. And I don’t remember what her exact words, but it was something to that effect. And at no point up to this point, had anyone said anything about it to me and it was jarring.
Like I was angry. I’d never thought that it would be something that I could ever consider. And I never wanted to see this doctor ever again, because how dare she make this suggestion? And she wasn’t telling me that I should do it. She was just saying, “This is an option.” And I, for a long time, was really angry. Like even after the pregnancy was over, probably for about a year, I was really angry about this one doctor. But obviously, I’m further beyond my grief at this point.
And I can see that she got me thinking, you know, she got me again, going back on the internet and researching and trying to find out what my options really were. So by the time I went to my next MFM appointment where they were going to do another ultrasound and do the amnio, I was about 15 and a half weeks at this point. And I had read a story about someone who had had an induction abortion, which was not something that had been offered to me.
And the idea of it for me was like, kind of, I don’t know how to describe it. The ability to give birth to my child, like while terminating versus going to a clinic, seemed like a way to validate the pregnancy or my child or the idea of also like, being in labor and going through all that pain, all in some twisted way, seems cathartic to me. Like I wanted to take all of her pain and put it on myself.
Dr. Fox: I hear you.
Megan: Is where I was kind of like thinking as I’m reading about this type of abortion, induction abortion.
Dr. Fox: For our listeners to understand, you know, when you’re ending a pregnancy and this is true if it’s an abortion, meaning the baby’s alive beforehand, or if the baby passes away inside, the two options are either to induce labor. The same thing we would do at the end of pregnancy but do it in the second trimester. And you’re on the labor floor. You have an epidural, we’re giving you medicine for contractions, open the cervix and the baby comes.
It’s not the same in terms of like, you’re not pushing for three hours or things like that. But conceptually, it’s the same versus the more traditional, so to speak, way to end a pregnancy is you go into an operating room, they put you to sleep. We have already dilated the cervix over the past couple of days in the office as an outpatient. And then when you come in the day of, it’s an operation where there’s no stitches or, you know, incisions but we remove everything from below while you’re under anesthesia.
Those are the two options. And what you’re talking about is choosing the one where you end the pregnancy but you’re doing it in a manner that’s sort of it mimics the same process as a birth. It is the same process as a birth, but it mimics what would happen at the end of pregnancy for a vaginal birth. And it’s interesting because, you know, some women feel the way you do, and really, really, it’s hard to say prefer, no one prefers either option. But they would choose the option where they’re delivering on the labor floor, vaginally for a whole host of reasons.
Some are what you mentioned, others are because they want to see the baby. They want to hold the baby, whereas if you have the operation, that’s not an option. And others feel the opposite. They’re like, “That’s very traumatic for me. I want to be put to sleep and wake up and have it be over.” And again, there’s no right or wrong with this. It’s just different people feel differently, and some feel strongly differently that they would rather have one option compared to the other. So you were thinking about this already again before even you had the amnio, before you had the results.
Dr. Fox: I mean, again, you knew this was a strong possibility.
Megan: Right. So I mean, well, and the interesting thing is that even when women miscarry, they go through those same thoughts. Like there’s some women that just want it over and done with like to deliver. And then there’s some women that want to spend time with their baby after they deliver them. So it’s not…the emotions that are there and the thoughts that are there are no different than if you’re…it’s a miscarriage or if you’re having to end a wanted pregnancy.
Dr. Fox: I’m just curious because we’re at the point where you’re thinking about it. You haven’t had the amnio yet, but you sort of…
Dr. Fox: You know, the writing is on the wall for you, so to speak. You’re like, this is a real possibility. You have hope that potentially it will be normal but you’re planning is not. What were your thoughts about abortion before all of this? I mean, you mentioned that you sort of had never thought about it. You were upset that the doctor even brought it up. Did you have strong feelings about it one way or another before you had this experience yourself?
Megan: Sort of. I was pro-choice but of the belief that I would never choose it for myself, but I never thought beyond that. I didn’t peel the layers back and like think beyond the surface of the idea. And I grew up in a family with a religion that says that it’s wrong. And so it just was never something that I won’t say that I wasn’t allowed to think about it but it’s just not something that anyone discussed because you just didn’t do it.
Dr. Fox: Meaning you felt that on sort of like on a policy level, you thought that it should be, you know, allowable, meaning there shouldn’t be laws against it. You were pro-choice.
Megan: Right. Exactly.
Dr. Fox: But you yourself, it was not something that you would have been comfortable with or that you thought you would have been comfortable with going through this.
Dr. Fox: Okay. And again, there’s no reason you would have to think about it deeper than that. I mean, you’re not in those shoes. When you did the amnio and it became real that these are the results, at that time…again, you’d already been thinking about it. Was it a very difficult decision to make, or had you already made it over the past month that, “If I get abnormal results, that’s what I’m doing?”
Megan: So I think I’d made it by the time we went to our amnio appointment. I started having nightmares because I mean, my options were hope to miscarry because 95% of trisomy 18 babies miscarry. But the fact that I was already 15 and a half weeks along, the chances of that happening were pretty slim. The next option was to go full term and then do nothing and watch her die. The amount of anomalies that she had, when we got the results, she had full trisomy 18.
I obviously didn’t know that before the amnio, but if that’s what she had, I knew that giving birth to her, she would not make it like, maybe minutes. If we intervened maybe a few days but there was no way. And then…
Dr. Fox: You mean did she have this like anomalies, like heart, brain, things of that sort of thing?
Dr. Fox: Got it.
Megan: Heart, lungs, internal organs, those kinds of things, not so much like physical, like there are hand and feet and had things also like anomalies, but, you know, it was more the internal organs that were the fatal thing.
Dr. Fox: Was the fact that you had two prior C-sections, did that weigh into the decision as well?
Megan: One hundred percent.
Dr. Fox: Meaning when I get into term, I guess I either have to deliver this full-term baby vaginally and take the risk, or I have to have a C-section for a baby that is not going to survive.
Megan: They wouldn’t let me have a vaginal delivery at that point.
Dr. Fox: It had to be a C-section.
Megan: I was not allowed to have a VBAC. So I would’ve had to have a C-section, which is major surgery and there’s a big physical recovery. And then if we wanted to have another child after that, I’d have to wait a certain amount of time for it to be safe for me to get pregnant. You know? And so not that at that point I was thinking about kids in the future or having another pregnancy, but, you know, I had to factor in everything. You know, what was the best decision for me? What was the best decision for my baby, my husband, my living children?
I mean, I’m still a mother at that point and taking care of two kids and, you know, between being nauseous and having nightmares at night. So I’m not sleeping. And not being able to have even a minute to escape the reality of the situation because I’m still pregnant at that point. It was just a lot. I mean, I was sort of starting to show signs of like some minor PTSD at that point, because my nightmares were I would be in Target, and I would miscarry, or I’d be at a soccer game, and I would miscarry or I would be home all alone and I would miscarry.
I mean, I felt like a ticking time bomb at that point. I had lost control of everything. You know, I wasn’t a good mom at that point. I mean, I was doing the best that I could but there was so much going on that I think I felt lost in that role. I really felt like I had no control over anything in my life at that point because something so traumatic and heartbreaking was happening.
Dr. Fox: And I think you brought up three sort of elements of the decision-making that are so important. It’s why every situation is so unique because on the one hand there’s what is exactly going on with the baby? Because trisomy 18 is almost uniformly a horrible diagnosis but there are diagnosis…
Megan: Unless it’s mosaic, in which case it only affects some of the cells. But for full trisomy 18, it affects every cell in the body.
Dr. Fox: I don’t even consider those the same diagnosis. They’re so different. But you know, when you have certain diagnoses, there’s a range. And are we talking about a situation? Are we very confident the baby’s going to be one way versus another? You know, life expectancy, any life expectancy, quality, all these things, they’re unique on the one hand. The second thing is continuing a pregnancy always has risk to the mother. There’s always risk to the mother for just being pregnant.
Now, obviously most women in most situations that risk is pretty small. And obviously, people assume that risk when they get pregnant. But in some situations, it’s more. So someone has to have a C-section to deliver the baby. That’s an additional risk. Or if someone has medical problems, someone has heart disease, someone has high blood pressure, there’s other layers to what is the risk to the mother. And then the third aspect, which is so critical is not just the physical health, but the mental health of the mother.
So different women adjust and adapt to pregnancy in general and certainly to bad news like this differently. For some women, they’re a little more stoic about it. And other women, it’s like an anvil it’s that…meaning you can’t function, and it can be really significant. And it’s important to take all that into account. And it’s just one of the many reasons these situations are so complicated and complex and individualized that it’s hard to just make a general statement about anything almost.
It’s just very difficult and people don’t even think about all these variables when they talk about this in both directions. I mean, you know, because obviously, you know, someone who, for example, is let’s say very, very what we call, you know, pro-life, which is just whatever, they’re opposed to abortion. But then they’re like, “Well, what if there is a risk to the mother’s health? And what if the baby’s not going to survive? And what if she’s doing horribly?” They may feel differently.
And on the flip side, if someone is “pro-choice,” you know, you don’t say pro-abortion. You’re pro-choice but they might feel differently if it’s someone who’s perfectly healthy with a perfectly healthy baby and she’s doing great. And so you can’t lump everything together and people are gonna feel differently based on the circumstances because every circumstance is different.
Megan: Yeah. I mean, I’ve seen, you know, people who were like me before my pregnancy, like pro-choice but I would never do it for myself. Just today I saw someone say, you know, “Every woman has the right to make their own medical decisions, but I think there’s a limit.” And like for that person, it was 20 weeks. And I was like, “Well, hold on, hold on. Like, no woman gets to that point in her pregnancy and wants to end her pregnancy. ”
At that point, we’re dreaming. You know, like I said earlier, we’ve thought of names. We’ve, you know, thought of all this different stuff. And I just think that every case is so complex. It’s not black and white. And it’s why it’s so important for women who are carrying a wanted pregnancy but are receiving very difficult diagnoses for their baby to be able to openly discuss it with their doctor and their significant other and make that decision between them and, you know, not have to worry about what other people are thinking.
Dr. Fox: Who did you bring into your circle? Like who were you talking to about this at the time, beforehand, before you made the decision that, “I might do this,” you know, “Considering this,” “I’m going to do this,” you know? Who did you let into that circle?
Megan: Not a lot of people. Obviously, my husband and then I think, you know, there was maybe five or six other people, and they were all family.
Dr. Fox: Were they all supportive?
Dr. Fox: Before it happened, did you get any messaging from anybody that was clear that they disapproved?
Megan: No. But there was one person, one family member that I spoke to who said, “You can’t tell anyone else in the family because they won’t understand, and they won’t support you.” And I was scared and vulnerable at that point. So I trusted what that person said. And so beyond, you know, the handful or so of people that we told, we didn’t tell anyone. I mean, people knew that she possibly had trisomy 18. And at that point, we had told everyone her name, which is Gemma, but we weren’t telling people that what our options were or what we were thinking about doing.
Because I think I was afraid that like, would the like conservative side of my family still love me? Because that’s what that person made me feel like is that maybe they wouldn’t. And then would the side of my family and friends who do seem to support these decisions, would they still stand behind what they actually said when they’re faced with someone close to them actually having to make this decision? So, you know, we were scared. We were really scared. And it felt like we had really no one to talk to except for this small group of people and our doctor.
Dr. Fox: How did it turn out ultimately? Because now you’re looking back, all the family that you were concerned wouldn’t support you or that your other family said, ‘Don’t tell.” They obviously know now because you talk about it. Did that happen?
Megan: Most everyone is super supportive. Some friends… At first, we started like, slowly telling like a couple of people here or there, you know. And I remember telling one set of friends and they seemed super supportive when we were talking to them. But then after that, they started kind of pulling away from us. And so, I mean, I don’t know that it’s because we told them what our decision was, but it sure felt like it. And then I had another family member, like two years ago, say to me, “Are you sure that was the right decision?’
Like questioning the decision. And that was really hard because it felt very unsupportive. But other than that, I mean, most of our friends and family are super supportive and have been so throughout. But once we went public a couple of years ago people were very supportive.
Dr. Fox: I want to give you an opportunity to talk about what it was like going through it. You know, you made the decision, you’re coming to the hospital. What was it like for you sort of from an experience standpoint, emotionally, physically, how did it go?
Megan: So at that last appointment with the amnio, they had found a lot of things. She was missing part of her heart, her lungs weren’t developing, there was something wrong with her lower abdomen. Also, there was a lot of things going on and, you know, maybe individually they would have been okay, but all combined together, it was clear to us that she had trisomy 18. But in order to have the induction abortion, I had to have diagnostic proof that it was fatal.
You know, that’s why we had to have the amnio if I wanted to have that type of abortion. And I remember being in the appointment being like, “Can I have this done?” Asking the MFN doctor and he’s like, “If your OB won’t, I know someone who will.” I think it was the first time where part of me was like, “Okay, everything’s going to be okay, because at least, you know, one person is like, super supportive of what we’re doing.”
And so we got the results back. They let me schedule it even though we didn’t have the results back yet. But we got them like the day before. So I went in on like a Thursday morning. I had found a pregnancy and infant loss support group the night before. And I had messaged the nurse that runs it at our local hospital and asked, “What do I need to bring? Like, what should I expect?” Because I didn’t know anything. All I knew was I needed to show up at 9:00 in the morning and then everything would get started.
I think that’s kind of where the healing started because I had reached out to a group that was gonna, you know, kind of emotionally support me after everything happened. So when we went into the hospital, we checked in, my husband’s job had just ended. His contract job ended unexpectedly. So he wasn’t working. And we checked in and again, there was a new doctor and she seemed really like, kind of tentative. It’s almost like she was hesitant to perform the induction.
And so it was kind of uncomfortable. I was super emotional, but I was holding it together. Like on the outside, I looked fine. And on the inside, I felt kind of like, I was going to shatter at any minute. And my OB had been amazing. Like the week before, they had me come into the office and actually sit down with them and talk about the induction abortion and not what was actually going to happen, but my emotions and thoughts about it. Because they wanted to make sure that I was making the decision for the right reasons and that I was prepared emotionally for it.
Up until that point, I’d never had any doctor in my life worry about my emotional health and not just my physical health. It was just important to me, and it definitely left an impression on me that the doctor really wanted to support me emotionally, not just physically. And this was the same doctor that had given me the original news that there was possibility for trisomy 18, but he was not there the day that I actually did the induction abortion.
So I went into labor and delivery, and they put you in like a corner kind of like away from the rest of the patients in labor and delivery in an effort to like kind of shelter you from the happiness.
Dr. Fox: It’s to protect you from them not to protect them from you.
Megan: Right. Exactly. I checked in at 9:00 and by 10:00 they had started everything. I remember the chaplain came in. No one told me she was gonna come in and that’s kind of when I broke down and started feeling all the emotions, you know. I was saying goodbye to our little girl that I wasn’t gonna bring home the way I had originally thought that I would, you know. And I would eventually leave the hospital with empty arms and, you know, it was just all the thoughts of…at this point, I was almost 18 weeks pregnant.
So I’d been in like six and a half weeks of this whole process of the emotional rollercoaster, the sadness, the grief, the stress, and the fear kind of all just hit me when the chaplain came in. And it’s not even anything that she said. It was probably like, “How are you doing?’ And I just lost it. So my husband actually left to go to a job interview. And while he was gone with my permission, he didn’t just like go. He wanted to be there, but it was important that he went to this interview.
So while he was gone, a new doctor came on, like, her shift started, and she was amazing. I’d never met her. She changed…and I don’t know because I’ve never really asked her. I don’t know if she changed the dosage or the timing of everything, but she was like, “We’re gonna speed this up.” You know, like, I had originally been told this could take two or three days and she’s like, “We’re not gonna have it be that long. We’re gonna speed this up. You shouldn’t have to be here like going through this for that long.”
I’ve said this to this day, she was everything I never knew I needed in a doctor that day. She was compassionate. She listened to me. She held my hand. She explained things really well. At this point, I hadn’t had an epidural and by mid-afternoon, my husband came back, and I was having contractions or cramping. It was just uncomfortable. It wasn’t painful but it felt cathartic. It was everything that I thought I needed and maybe I did need but, you know, because I was trying to take her pain and put it on myself, you know, so that I could say goodbye to her.
Around 10:00 something, I had finally had an epidural a couple hours earlier and at like 10:30, I called the nurse in, and I was like, I think my water broke and they tested it. And they said, yes, but they said, “We’re gonna give you a little bit more time.” So then they came in at about 11:30 and said, “Okay, it’s time.” And they gave me a few minutes because I started crying again. You know, because this is it. This is the moment. Like this is the moment that she’s no longer physically connected to me because this was a baby that I had wanted.
Like even though I was choosing when and how to say goodbye to her, like, I had still wanted her, you know. So at about 11:40, it was just like one push, and she was here. And they have a cuddle cot at the hospital. So for those that don’t know what a cuddle cot is it’ll lengthen the time that a baby can be in the room with a family after the baby dies but I didn’t know what it was at that time. I don’t even think I knew for like a year that it was a cuddle cot.
So, we kept her in the room with us. We had the chaplain come in. I didn’t call my church to do a blessing because I didn’t wanna hear no.
Dr. Fox: I understand.
Megan: Because you know, I thought…I was still really scared. I knew that I was making the right decision, but I didn’t need or want to hear someone else tell me that I wasn’t. And at that point, it was too late. Like whatever anyone had to say at that point was just salt in a wound and I didn’t need to hear anything negative. I just needed support at that point. So the hospital had a chaplain come up and he did a blessing and we had pictures taken.
The nurses at the hospital we were at have been trained on how to take pictures after a baby dies so that, you know, if parents end up wanting the photos, they can have them. So yeah, it was just a lot to deal with. The next morning, you know, they told us we could stay as long as we wanted. And the nurse that’s in charge of the perinatal bereavement program, it’s called Share, by the way. It’s S-H-A-R-E. It’s a national organization. She had said that some parents like or want to take a photo with their family.
So like, if you have living children, have them come in and we can take a family photo, you know. And so we had decided that’s something that we wanna do. And it’s not some like weird grotesque thing. It’s a way to give closure to the living children that thought they were having a sibling coming home. And then also it’s the only family picture that you’ll ever have. And so even if you don’t wanna look at it in that moment, 10 years from now, you might want to.
And so it was important for us to do that. My husband left the hospital and I’ll never forget this nurse was like, “Are you sure that’s what you wanna do? You’re gonna traumatize your kids.” And this is something that whenever I’m speaking to medical professionals or people who work in labor and delivery, this is something that I always bring up because that moment changed the rest of my time at the hospital. That moment, I didn’t feel comfortable anymore.
I was no longer in a safe place, at least mentally and emotionally. I still had my kids come. She wasn’t gonna change my mind but the fact that she asked me after my husband left, when I was in the room by myself, it just didn’t sit well with me. And it’s a decision that my husband and I made together that has nothing to do with what that nurse was in my room for. And so for me, it was just like a line that was crossed.
So after the kids came, we took a picture and they left. And they were not traumatized. My two-year-old had no idea what was going on. And the five-year-old just thought that she was like a little tiny doll. He didn’t comprehend that it was really his sister at that point. So we rushed out of there after that because I just didn’t wanna be there anymore. It’s one thing that I really regret because I could have had five more minutes. You know, I could have had another minute of holding her, you know. You’d never get that time back.
Dr. Fox: I wanted to ask you in our last few minutes two things, number one, looking back on all this. I mean this whole experience that you’re talking about, how did it change you as a person?
Megan: Well, it made me realize that at least for me, I can never assume that I’m gonna react a certain way or make a certain decision until I’m actually faced with that decision. Like my assumption that like, I’m pro-choice and that I would never do that was wrong. Not just because I ended up choosing it. Because I’d never been faced with the decision, and I’d never had to think beyond the surface.
And so when I’m talking to people and it’s not always about terminating for medical reasons, sometimes it’s about other things but the story still kind of relates to whatever it is they’re talking about. And you know, I just try to get across that you don’t know. You cannot assume that you’re going to make certain decisions until you are actually sitting with that decision on your heart. You know, you can’t possibly know.
Dr. Fox: And I also wanted to ask you, you mentioned that you went public a few years later.
Dr. Fox: What do you mean by that and what made you decide to do that?
Megan: It was 2019, I think, May of 2019 when there was a bunch of anti-abortion laws that people were trying to pass in other states. And these laws, a lot of them, I don’t think people understand this, that they affect families like mine. They make it harder for us to get the compassionate healthcare that we need. You know, they make it harder for us to make these decisions, whether it’s because we have to get more diagnostic testing done to prove something, or whether it’s being told we can’t do it, you know, these laws still affect us. I felt really compelled. At that point, I’d talked to a lot of hospital staff, and in the local support group I’d been open, but our friends didn’t know. We still had a lot of family that didn’t know. And I just kind of hit a point where, well, if someone else isn’t gonna talk about it, then I need to. Like, how are other families like mine gonna get the support and help they need if there’s no one else out there talking about it?
And so I wrote out something and then I called all the family that I needed to and told them what happened and why we made that choice. And I apologized for omitting the truth. Like I never lied about what happened, but I just let them assume things, you know. I let them assume that we miscarried. I didn’t correct it. And so I apologized for that. I told them what happened. And then the next day I posted something on social media, and I expected the worst, but the worst didn’t really happen.
The outpouring of support was amazing. There was a few people that weren’t so nice, but I expected those people. I didn’t expect the amount of support that we got. And so that day made me like, realize how much more important it was to share my story and to share other stories from other women. And also to find a way to support them because I was getting messages, you know. Private messages on social media from different women saying, “Thank you for telling your story. You know, this is my story.”
And they just needed someone to talk to. And then there were other women who felt empowered to share their own stories. And so that kind of catapulted us into starting a secret Facebook group for families like ours with the help of our hospital. And that since has turned into a monthly virtual support group meeting just for families that have had to make a difficult decision.
Dr. Fox: Wow.
Megan: I think I’ve always said that like, I will keep unpacking my grief. I’ll keep sharing my story if it means that one other family can know that they’re not alone, that there are other families that have had to make this choice. And so that they have that support that they need. Because, you know, I had support from the perinatal loss community, like other families that had lost their baby through miscarriage or stillbirth, but I had never had the support of a community of people who have all had to make that decision to end a wanted pregnancy.
Dr. Fox: Wow. Megan, I could speak to you for hours. Your story. Listen, it’s…
Mega: I also talk too much.
Dr. Fox: No. It’s so compelling. It’s real. It’s just a real story and this is really important for people to hear. And again, this podcast, this episode of this podcast, it’s not meant certainly on my part to be pro-choice, pro-life, pro-anything. It’s pro-story. It’s just to hear people tell their story and everyone’s gonna make their own decisions about this for themselves personally, and about what they think. You know, the state that affairs should be in the world, and that’s fine. That’s everyone’s prerogative.
But again, I just feel strongly about hearing people and understanding people. So when you make a decision about what you think about this topic, you can hear and understand a little bit more potentially and let that inform your decision or be part of what informs your decision.
Megan: I think it’s important for people to understand that my decision was the right choice for me. It’s not necessarily the right decision for the next person.
Dr. Fox: Thank you so much for taking the time, for telling your story on this podcast and also even beforehand. I know that a lot of people are gonna listen. And I know that I’m gonna be getting a lot of comments, and I think they’re gonna be supportive as well and appreciative that we made the decision to do this. And that’s really, I thank you because you’re the one telling the story. I’m just asking questions and I just appreciate it very, very much. Thank you.
Megan: Well, thank you for having me.
Dr. Fox: Thank you for listening to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman” podcast. If you are 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 firstname.lastname@example.org. If you liked today’s podcast, please be sure to check out our “Healthful Woman” podcast as well, where I speak, with leaders in the field 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 podcast 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.