#112 | Late-Term Abortion: Andrea's Story of Choosing the Impossible

There is this just awful decision that you have to make. At the end of these pregnancies for me whether I was going to have a child that could possibly be a very high needs, or need a lot of surgeries and be very disabled physical anomalies, or I would spare this human life from pain and misery. And that lives is the most difficult decision I will ever make my life ever. And I still have to be okay with it today.

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Hi, my name is Andrea right and I am a musician, singer songwriter. And I have had three unsuccessful pregnancies. Two of them. I terminated and one of them was a miscarriage. I first was pregnant for the first time in my life when I was 34/35 in 2014. And there were complications. No one in my family has had any kind of genetic issues that I know of. I had a CVS all the screenings. But in the 11th week, they have a screening of a nuchal fold reading. And mine was above, it was probably around six or seven. And anything that is above five millimeters is considered alarming. And they call it a cystic hygroma, which is basically a water filled tumor that's in the back of the neck. It's a reading in the back of the neck. And it's a screening but the screening means basically it's like the baby the fetus raising its hand saying something is really wrong. And 50% of the time in a nuchal fold reading, there is a genetic issue. If it's not genetic, then oftentimes it has to do with the heart 30% chance 50% chance, genetics 30% chance the heart, and then there's a 20% chance of it being nothing at all.

So Andrea, just to clarify, for women listening, we're talking about the early screening tests that are screening mostly for trisomy 21 Down syndrome and trisomy 18. Correct.

And it happens the nuchal fold reading happens in a screening around 11 weeks. It's one of the earliest screenings that you can get, there was so much uncertainty. And there is this just awful decision that you have to make. At the end of these pregnancies for me whether I was going to have a child that could possibly be a very high needs, or need a lot of surgeries and be very disabled physical anomalies, or I would spare this human life from pain and misery. And that lives is the most difficult decision I will ever make in my life ever. And I still have to be okay with it today. When did you have to make that decision? So when the nuchal fold reading comes back, they the the process in the hospital and the medical field is that well, this is alarming, and let's gather more information. And the next process is to do the genetic stuff. And then you wait around for another three or four weeks because the microwave can micro array can take up to four weeks. So I think you wait around saying does my baby have tried like you said trisomy 21 downs or something severe. And when it comes back, the test for me they both came back normal. And so while you say okay, is it full steam ahead and they say well or not. And I think that I had we My partner and I had to assess how much we were comfortable with that uncertain And D and whether we were okay with having a child with what degree of abnormalities. But if they couldn't find anything, of course, this was for me a wanted pregnancy, I really wanted a child. And I thought, okay, let's just keep going. The problem is, is that the next thing that they have to look for in the nuchal fold reading is the heart. And so if it's not anything genetic, or they can't find anything on the microwave, they look at the heart. And you the issue is that you have to wait until 20 weeks until you can get a fetal echocardiogram. And that's a long time to wait to understand if there's something wrong with your child. And when I did in my first pregnancy, there was I went to NYU, and the echo cardiologists said that there, there's a aortic stenosis. And there was there was problems with the heart. They don't know how much the heart in a baby and a fetus that size is like, you know, smaller than a quarter. I mean, it's just like a nickel. It's so tiny.

Not only do they not know how much is wrong with the heart, but there might also be the possibility of repair, post birth surgeries, things like that.

Yeah, one of the real emotional issues I had with it was that these high risk patients that they see all day long, it usually doesn't end well. And their attitude towards this is, I've seen it, something's really wrong. And it's not going to end well, probably. And then they don't have a diagnosis for me, they don't really know what's going on. There's so much uncertainty, there's so much just I get another test. And it's not really any helpful information that can help me make a decision. In the first pregnancy, I terminated at 22 weeks, right at the legal limit in New York State. And then I was pregnant again, I got pregnant again this past year during the pandemic in 2020. And although the doctor said it was a one to 2% chance that this situation from my first pregnancy could happen again, it actually happened again. And so I was the scenario was a little different, but I ended up terminating that pregnancy at 21 weeks.

For what the same purpose Andrea, what for what reason, the this, this last child, which we named Luca, was h LH s hypoplastic left heart syndrome, which is where the left ventricle doesn't develop at all. And then he had a whole slew of other issues. He had missing vertebrae, he had his left kidney in his pelvis, he was missing a left lung. I mean, it was just even if you know when we went to the Echo, the cardiologist he said, right off the bat, he said the success rate for h LH s now is incredibly successful. But you have to have three surgeries one right when they are born another I think after two years and another at five years. And I don't think that our child would have lived through the first heart surgery with all the other issues. I mean, he and if he had to have spinal surgery, his heart couldn't take it. I mean, there was just, he was in a bad way.

Andrew, can you talk for a second about the difference between Bruno who was the first baby who you terminated at 22 weeks and look up who you terminated at 20 weeks, the difference between those two experiences as far as the termination.

This is big for me, because the first pregnancy I was like a deer in the headlights. I had never heard of another woman having issues like this. I didn't, I was reading all of these case studies, I was a mess. And my partner and I were not really on the same page. He he had some religious Catholic beliefs or and he wasn't he didn't really want to terminate, I was more, you know, risk averse and thought of when it was presented to me to terminate. There was this fear of it actually, they couldn't get me in. It was at 22 weeks before the the they couldn't schedule me for surgery before the law states that you can no longer get a surgery because it was right at the end of the second trimester. So they got me in for surgery for a DNA.

Can we do it? This is just unbelievable. When I think about this, it's never quite occurred to me in this way. You couldn't have terminated sooner, because you couldn't have had the information that you needed until you did the anatomy scan. Exactly. And then you had this tiny little window to decide what to do in literally life or death situation before the law intervened and disallowed you from even doing anything.

Exactly. This Here's where it gets crazy. Because in my first pregnancy, I had a DNA they scheduled it. And I have the night before I was on the phone with my friend Hannah. And I looked up on Google what a DNA was. It's the most painful thing ever. It's absolutely disgusting. I absolutely freaked out when I saw this. And I said, I don't think I can go through this. I had to be coached to go through the surgery. The second time this happened to me with Luca, this past, just this happened March 17. I said, What are my other options? They didn't tell me this. They, they say they do. But they discourage it. And the other option is an induction termination. So you'd go into the hospital and you actually have the baby, the issue why they don't, I had an MFM Fellow at Bellevue, tell me, you're going to get a lot of pushback for this. And I don't know if we're going to be able to work this out to get an induction termination. And I said, Well, this is my choice. Why are you going to get pushed back? Because it's a political issue. If it's late, enough, between 20 to 24 weeks, the baby is viable. And so what happens is, is that they suggest to go in through a procedure to give a vitamin K potassium shot to the baby's heart to kill the baby, before you induce and give labor, because what happens is, is that if you have decided to terminate this pregnancy and you give birth, and the baby's breathing, and seems okay, the risk is that somebody in the hospital is going to whisk the baby away to the neonatal unit. Nick, you without your consent, without my against your plan and your wishes. So against my planet wishes, yes.

So and why would you have preferred that option because it would have been much gentler for the baby in the first place.

So going, yes, going into this second pregnancy, I didn't want I didn't really want to get the the but if it's before 21 weeks, they don't have to the baby is really not viable outside the womb. So I didn't actually have to have the shot of the the, you know, to stop the babies, the fetal heart. And so I was I mean, I was just so I wanted to see the baby. I wanted to hold him. And I did. And I have to tell you, every every was, yeah, I read an article early on that in Europe and other areas of the world, the induction termination is much more widely used. In America, I have a theory that women and people in general just don't want to feel their pain. They don't want they can't handle it. They don't want to and that's perfectly okay. I'm not I you know, I have I have my own views upon on on men, medical, pharmaceutical, you know, things like that. But I think that as a culture, we are conditioned to say, Oh, you don't you don't want to have pain. You don't need to feel the pain. And we can just put you under and make this whole thing disappear. I woke up from the Bruno's surgery, and I thought, Where's my baby? Where it Where is he? He's just gone. And then I walked around with emptiness for years. For two years. It took me two years to get to just get on top of that. When I just I gave birth to Luca this March 17. And I went into the hospital with a close friend Emily, who is midwife. And she was there I gave birth, he was alive, I put him on my chest, I helped him he was alive, we got to spend four hours with him. And that, to me was processing in the moment saying goodbye having a ceremony for him, telling him that I loved him, telling him that I wanted him and that I was doing this for you.

Because this life was not suited for him his body. You know, for me to be able to see him hold him and let him go. And then I held him for four hours and I had to walk out of that hospital put him down. They gave me a Memory Box and I had to walk out of the hospital. And I walked out of the hospital and you know somebody is holding balloon saying it's a boy. It's just, it's a part of me now.

That grief, that emptiness. It's a part of me but I do have to save that the healing in the what the process of actually going through that and giving birth and holding him and seeing him was incredible to me and I i would never choose another way to go through this process. And not only that, but I feel like I this process I was grieving again for Bruno all over again. You know, it was just and the doctor said this wouldn't happen again. It's this rare thing. We can't find anything and it happened again.

So the first time with Bruno, you didn't do the injection method you didn't get to experience seeing him or holding him. No, it was a late stage abortion and with Luca, you experienced birthing him. Yes. You vaginally birthing him as a birthing family birthing him holding him knowing that knowing that parts of his heart never were even there, his organs were all out of place. And he was he looks so normal. He was perfect. He was perfect. On the outside, perfect on the outside. He was so beautiful. And how many weeks he was taught, I think I was 21 weeks. How how small was he? He was he could fit right in my chest? He was I think he was I can't remember. I think he was like a pound in something.

So what happened in your second healing process? I mean, that you had to I'm imagining his birth. I mean, it was a very odd blessing, because you got to, you know, it's like you were robbed of the whole experience with Bruno in a way. Yes. And you like this? forced you slash allowed you to deny what happened? What resurfaced for Bruno all those years later, when you were going through this with Luca, like what was that like for you emotionally? And what what did you do next?

And first of all, I thought that it to me, Bruno was a real, it was a borderline case, I could have gone through with it. And he could have had maybe lived maybe had heart surgery, maybe not have had any other issues. And I could have had him so that was always in my mind. And one of an I wrote a song about the decision to let him go into into terminate the pregnancy. And it was the hardest is I mean, you know, you ask 1000 people, because you don't know if you're making the right decision. And the best advice I got is, Andrea, you gotta go home and sit on your meditation pillow. And you have to check in with yourself. And you have to be okay with this because you're the only one that has to be okay with this decision for the rest of your life. So you better make it in a way that you don't feel influenced by anybody else. That was a real takeaway for me. When I was pregnant with Luca, this past year, I thought, well, this is my second chance. I thought this optimism I was gonna put out this song that I felt was very personal because I had this second chance in life and I felt optimistic. And then it just started tumbling downhill again, with all these same diagnoses and issues and complications. And I said, How do I approach this differently where I can get relief by this time it was different because I had acquired a meditational practice since Bruno. Because of my grieving and the two years after that I was a wreck and I had to had to put in place like coping mechanisms and practices and all sorts of things to just move on with my life. And so the second time around, this happened it was different and I decided to just go through with the induction termination and have the child it was I'm so happy I did it.

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You know I am fiercely pro choice. This experience made me understand how people could be pro life in the sense that they that life is so precious and it's so special. And I understand that in there is a I mean opening up just now like this I know some people will listen to my story and think you know that their shame there is odd shame because of cultural and other people's religious beliefs. I had I had a woman shame me after Bruno said How could you do this that you know this you should have your God gave you this and this is what you are given and you should you decided to end the life early and you know, that wasn't your right or whatever, if I can stop someone suffering in this world that's on me and I get to make that choice. And that is with Luca, it was a much easier decision because he had so many issues, so many issues that I my conscience was much more Eddie's I set on my meditation pillow. My my partner and I were very onboard with this decision. And I felt very supported. I was going through a second time around on the on the on the course on the second lap, I felt like and so I sort of knew the ins and outs of the medical I really had to be fiercely my own advocate just like always, you know, I go in there with like, armor on I'm like ready to fight in hospitals, because I got to look out for myself, because who else will that's how I feel.

Having been through this twice. And knowing you know that these prenatal screening tests are not perfect. You don't always have the answers. How would you counsel women, and you're in a similar situation? I know personally, as a midwife, how I have counseled women, and it's always been challenging. As a home birth midwife, many of the clients that I've served have opted to not have the screening tests. Yes, yes. And so that makes counselling easier. Because you don't know, I understand that. I come from a very academic family that puts a lot of emphasis on science and on medical research, and on just the medical field in general. So and I come from, like a family where we prize knowledge and think well, however much information we can have is good. But in this situation, it is not always good. And I completely understand why you would either decide to choose to just not know anything, and say I'm committed to having this baby, and we're going to have whatever we have, or you're going to go down this testing, more traditional path of running every test because the wit there's never any diagnosis, per se, there's just screenings and we think they give you these numbers like 5050 or 65. You know, there's your odds, your ads that give your odds, and it's not helpful in making a decision at all. There's so much uncertainty, you I would think that, Oh, these are my tests. And this is what it says. And now I can help make a decision. And it's not really how that goes. On top of that. I feel like if you had a diagnosis of cancer or something like that, a doctor would say, oncologist would say, Well, this is this is our plan, this is what we can do. And this is what I would do. And they would suggest and but in the MFM world, and in they because of the religious, cultural, ethical situation that this is an it's a, it they are so afraid to suggest or to say anything that would tip your decision any which way that they step out of that and all they offer is more tests. But more tests don't necessarily help. They can. But it just it doesn't help. It can gather some more information. But it doesn't help. It didn't help me make a decision.

And some of those tests, even if they are more definitive, come with significant risk.

Yes. Sometimes they do. Yeah, for sure. Absolutely. You know, there's an amazing blood test, the maternity genome, the 21 that test for so the trisomies and things and this time around, I didn't even get a CBS with Luca, because I was so committed to having the baby, you know, and it wasn't until the very last minute at 20 some weeks that we were finding all of these things that really tipped the scale for me and in terms of finally deciding determined. But yeah, there's that there's the uncertainty of it all. And that's what I want women to know there's so much uncertainty and finding people to speak to when you go on Google Now. Got a good idea? Good idea. I mean, you find so much information, it doesn't always pertain to your case. And then you're going to bed all night worried? Does it? Does he have this? Is it this and it's just this mystery. And after it all, I've had cardiologists and the most expert MFM on my team say, this is a fluke, we can't find they did a biopsy, that's another advantage of having the induction termination. They can take actual they can do a real biopsy, because they have the fetus was Luca gift to his brother Bruno in some way.

Yeah, it gave me some peace of mind. Because with Bruno, I never knew if I made the right decision or not. And I think going through this process again, and having the chance to live it all over again, I think I think I was able to forgive myself, in a way. And just to acknowledge that these are, you know, someone told me this amazing story about how, in some, this some religious belief that there's this in this cutting the karmic ring, that there is these souls that only need to pop into the world for a minute in order to finish their karmic circle, and that, that they're done, so that you're serving a purpose by allowing the soul to come into the world for a moment and finish their, their work. And, you know, certain things like that I just, you know, I think is very interesting. And

kind, and it gives you some sense of relief. There's so much unknown, there's so much alone in this world. And, and I, you know, I tried to walk into these, this specially this last pregnancy with as much you know, you know, open eyes as possible, and just to be present into, I loved being pregnant, every minute of it, I just felt it was magical. And I, I don't know if I'll have a child or not, and but I am grateful for the experience that these two babies have had in my life, and the the impact in the influence and how they've shaped my life. And I'm grateful for that. I think it's made me a more sympathetic person, for sure. And to understand not to judge other people in their decisions, which is amazing. You know, I mean, whatever feels authentic to your journey, that's what I learned. You know, that's what we do.

You know, even if that soul just comes to touch a life, the ripple effect is just massive. Yes, it's just mid still rippling. It's just, you know, now you just produced a song that we want you to play in a few minutes. But you just never know how that one little touch changes the world. Right? So it's even if it's, like, you know, beyond what it does for that soul, it's doing something for so many souls, not that that makes it feel fair or right. Not that that's much of a consolation, but I just think it's the truth. I think it's what ends up happening.

I think when we experienced deep pain of any kind in life, if we can give it somewhat of a purpose. Yes, it helps us grief, it helps us overcome it, it helps us heal. Absolutely. So and before you play your song about Bruno, can you give our listeners takeaways that this experience taught you or, you know, words of wisdom, advice for, you know, learning how to make this choice if they're faced with something similar?

I think the biggest takeaway from me the three biggest takeaways for me, number one was the induction termination versus the DNA. A DNA is a surgery where you go under, and I found that actually going into a hospital and giving birth to Luca was a magical experience that completed this birth for me in this life for me, and it was respect and reverence I could show my child, but in a proper ceremonial way to say goodbye. And in terms of my grieving process, and in terms of just my emotional well being, it was night and day for me. I really, it was meaningful. It was purposeful, and I was so much better. That was the better way for me to go. The other thing about the testing, I think if I were to do it all over again, I think that I may just have faith in I understand that I'm committed to having a baby and I am on board and come what may and I may or may not do testing or at a certain point, after you know a CV, a CBS or something like that just to you know, I would stop the testing and say I'm committed to this and whatever comes comes. But there is a lot of uncertainty and to have support around you in whichever way that that feels good is really important whether it's coming for your partner, or a faith or meditation practice or something, there's just there's gonna if you get an abnormal reading or screening get ready because there is going to be maybe months if not for the rest of the pregnancy just an amazing amount of uncertainty that you have the uncertainty is just the thing that you have to deal with on top of the all the information and the third thing is is just the decision understanding I think I you know, understanding that this is a decision that will be with me and shoot me and be a part of me for the rest of my life. So whatever I decide to do whether it's terminating or going through with the pregnancy that I knew that I had that it was the right decision for me and not anyone you know, and for me and my partner and and that I was it was something that I could live with and be okay with no one told me the question I ask you skirt the issue and now I've got to make a decision on the bottom line that is yet to live.

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Even when you think that you've done all this work in therapy, and you've done all the self care and you feel great and you do feel great. And then all of a sudden, you see a mother walking her baby or holding up something and you go oh my god, and it's just like this crashing wave that it just grief to me is like waves you're good and then something triggers it and it's just this emotional response that you can't even hold back.