Now that Aviva has become pregnant, her journey is really just beginning, with two rare autoimmune disorders making her pregnancy care as unique as anyone could imagine. As an expectant mother, Aviva shares with Dr. Fox how important it was to have people around you who are empathetic, kind, and supportive as she navigated the (at times) severe ups and downs of worry, joy, and terror during her pregnancy. She also shares what it was like giving birth in the first few weeks of the severe COVID outbreak in New York City, only adding to the post-partum stress and depression that often accompanies mothers in the best of times.
“Aviva’s Story, Part Two: Unexpected Blessings”
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Dr. Fox: Welcome to the “Healthful Woman Podcast,” the fastest-growing podcast in women’s health. Today’s Monday, June 20th, 2022. My guest today is Aviva, who’s going to tell part two of her birth story, Unexpected Blessings. Last week, we got to hear part one of Aviva’s story, and it was a great one. So if you have not yet heard last week’s podcast, be sure to check that out prior to today’s. As a reminder, if you would like to share your birth story on this podcast, you can reach out to me through the website or email me at email@example.com. Thanks a lot. Enjoy today’s podcast. See you next week.
Welcome to today’s episode of Healthful Woman, a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB/GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. All right. Aviva, welcome back to the podcast. Thanks for doing round two. I appreciate it.
Aviva: Thank you so much. I’m excited to be back to tell more of my story.
Dr. Fox: Yeah. Usually, the big secret with the podcast is that when I have people on twice in a row, it’s one recording session, we just cut it in half and split it up. But this is actually two separate recording sessions, separated by weeks, by the holiday of Passover. It’s just a whole different time of the year that we’re talking again. So, really, I do appreciate you actually taking more time on a different day to do this.
Aviva: And I appreciate the time as well. So, hopefully, my story’s interesting enough to warrant the second call.
Dr. Fox: We left off last time with you getting pregnant for the first time. And last podcast was really about your journey to get pregnant, which was, of course, a fascinating story itself. But now we’re gonna talk about your pregnancies, your first and your second. And I usually ask people who had a very, either difficult time getting pregnant from, let’s say, fertility reasons, which obviously was not the case with you, or had a long journey to get pregnant for other reasons like medical reasons, which would be more related to you. At the time when you’re first pregnant, the first trimester, how much of that emotion is joy/excitement versus terror of what you’d sort of gotten yourself into, so to speak? I’m always curious how people feel about this because… It’s obviously both, but how would you, I don’t know, give the percentages?
Aviva: It definitely is both, and I think it really fluctuates by the second. I’d say the positive side, the part that felt purely joyful was knowing that my concerns about changes to my body were most likely for a positive reason. As someone who’s dealt with different medical issues, you become hypersensitive to your own body and become acutely aware of anything that feels different. And usually, that feeling is a trigger to say, “Something’s wrong, call a doctor.” Or just continue monitoring this to see if this gets worse or changes over time because that could indicate that there’s a problem. And I guess there was something that was really positive for me about experiencing changes and saying, “Wait, this may actually just be because of this beautiful gift that I’ve been given.” So that, I’d say, was…4/5 of the time, it was generally a positive experience. I’d say the 20% was the worry that, “Wait, what if this is actually just a new symptom of something I’ve experienced previously and it’s just been triggered by being pregnant?” There was still a little bit of me that had this tendency to worry.
And I’d say feeling physical changes was a generally positive experience, but there was this kind of looming worry that I had that choosing to try to get pregnant was potentially the most selfish thing I’d ever done because as much as I could prepare for the best possible outcome for both me and the baby and as much as I wanted to have a baby, I didn’t know how I would actually fare. And to think about bringing a child into this world where I may be unable to be a good parent or a present parent because of medical complications or really poor outcomes, or even worse, that I would, in any way, my genetics or my predisposition to have autoimmune issues may negatively impact a child. There was this just guilt and worry that I had that the outcome would not be positive and that I would’ve made a bad decision in trying to get pregnant. So that was something that worried me from the start, and for better or for worse, is still something that I grapple with now where I carry my fears with me where I see a behavior in my child and I’m like, “Wait, is that indicative of something?” And they’re healthy, wonderful little people and I’m very, very fortunate, but I carry that worry.
Dr. Fox: How do you function with that guilt? Is it just something you just wear as a backpack and go about life that way like during the pregnancy or is it something that may be diminished with time?
Aviva: I think actually having the right set of support helps, or at least helped me. So, in part, that’s my partner and my husband, in part, that’s my parents who continue to just help me count my blessings and focus on positives and probabilities. And then there’s also the medical team. So it’s the MFM and MFMs who continued to tell me that I was doing well and that the baby was thriving. It was my local GI and hepatologist who I don’t think I had an opportunity to mention that in addition to Stanford and Mayo, I found local specialists as well that have been really wonderful supports and for them to just continue to reaffirm that certain things were okay and normal, and same thing on neurologist front. Having the right medical team to understand that I was going to skew toward the concerned and worrisome expected parent profile and for them to not just disregard that or say, “Oh, no. This is someone who overreacts,” but actually allow me to overreact and understand that that was probably appropriate given my history, but then also to take their expertise and say, “Okay, that is actually normal.” Or, “It’s normal for you to feel this way, but you don’t have to worry.” Having gone into the process of trying to get pregnant and then being pregnant with that team helped balance me a little bit.
Dr. Fox: Did you get any messaging that was worsening your guilt, meaning maybe a friend or maybe a family member has said some comment either inadvertently or purposefully to make you feel like you were, as you said before, being selfish? Did you get that from anybody or anywhere at any time?
Aviva: Fortunately, not from people who indicated that I was being selfish, but it’s more just from seeing the challenges that people around me were going through. A good friend of mine was diagnosed with MS while I was pregnant. And that, to me, was just jarring in that here was someone else who leads a very healthy life and is a relatively young 30-year-old and suddenly she’s struggling with this terrible, unfortunate diagnosis, and it can happen to anyone. And in her experience meeting with various experts, there was… Well, it’s not necessarily genetic even though there are several autoimmunes in her family, specifically on the maternal line, and how that may increase probability of having an autoimmune and MS being one of them. That just gave me a surge of additional guilt where it’s like, “Oh, well, here’s this healthy person and now her mother has her medical challenges, and look, it’s like it’s some way being passed on to her, and do I have to worry about?” And a lot of those are unknowns.
I just hope that medicine continues to stay ahead of any challenges that I face, my friends face, my children face or may face in the future. That was a trigger for me. And another was actually one that was very unfortunate where a good friend of mine lost a child. There was a late-term miscarriage in…I think it was 37 weeks. And the cause of that was entirely unknown. At a checkup, there just wasn’t a heartbeat. And that sent me reeling in its own way because I was not there yet. This is someone who was a little further along than I was and here’s this healthy person with a very normal pregnancy and a really, really tragic outcome. And if that could happen to someone without my medical baggage, what did that mean in terms of the viability of my pregnancy?
Dr. Fox: Yeah. It’s so interesting to hear you talk about this because while you were speaking, I was struck, these concepts, they’re really new in the history of people, right? This idea of, “Should I feel guilt that potentially I won’t be well for my children, or I’ll pass on some illness, or I won’t be around for them, or maybe they won’t do so well?” It’s really probably only ever been thought about on a regular basis for the past, I don’t know, 50 to 100 years. And it’s almost a sense of, as humans, like it’s a luxury to sort of have those feelings because you think about 200, 300, 500, 900 years ago, babies, there were stillbirths all the time and mothers frequently didn’t survive childbirth, and certainly, the life expectancy, if it’s your 40s, right? Sort of, everyone, that was the norm.
Dr. Fox: The norm was to have children despite the fact that life was essentially miserable and people died young and there were so much horrible things going on, but people, this is what we do as humans. We procreate, we create the next generation. And there’s a lot of reasons why that might be biologic, psychologic, religious, there’s all these things that go into it, but that’s in us, that drive to have children, maybe not in everybody, obviously, but as people, that’s really deep down in our DNA. And it’s just fascinating to hear how it manifests nowadays when people do so much better that it comes about, you know, someone, you, 100 years ago, no one ever thought like, “Hey, you’re perfect. You’re fine.” It’s just interesting.
Aviva: It really is… And it’s not justified, but there’s this feeling, at least that I have. I won’t put this on anyone else, it’s like, “I should be able to control anything.” And reality is I’m not in control of anything. But because of as a society that we’ve evolved so much and we’re so sophisticated and we have so many resources at our disposal or we can have so many resources at our disposal that I think that I should be able to… I look around me and I’m like, “Oh, all these other people have certain outcomes and if I make certain decisions and if set my life a certain way, I’m able to ensure certain outcomes.” And then to realize you can’t, then you just feel like, “Well, now I’m disadvantaged.” When, to your point… Even thinking about my grandparents, my father, his mother had a child before him who passed away within hours of being born.
So, the eldest of that family didn’t survive. And my grandmother missed her and mourned the loss of that baby for her whole life because it was a significant loss, but she never felt guilt. The language she used to describe it was a loss, but she didn’t feel guilty that she had tried to have this baby and brought it into this world. And she didn’t feel guilty about trying to have additional children. And she went on to have four healthy sons and built a beautiful family. And it’s interesting, to your point, that mentality is something that is relatively new. And I don’t think I’m the only one who feels guilty not being able to ensure or have a guaranteed tap to whatever future that we want for ourselves.
Dr. Fox: Yeah. So many things come up in pregnancy where I have to tell someone, “Listen, this is completely out of our control. It’s out of my control. It’s out of your control. And that’s just the way it is, at least, currently. And maybe it’ll be that way forever. I have no idea.” And that sort of like nihilism that is just out of our control, for some people, it’s horrifying. They’re like, “What do you mean I have no control over this? I can’t believe that, it’s not possible.” And other people find it very comforting. They’re like, “Ugh, finally. Okay. I can move about my day and not worry that I’m causing harm all the time.” And people really respond to that reality differently when they feel or learn that something’s out of their control, whether it upsets them or pleases them. It’s really fascinating study of who’s which.
Aviva: Yeah. And I’m probably envious of the people who are relieved when they find out some of these is out of their control.
Dr. Fox: Just walk about the earth blissfully. It’s an amazing trait. So…
Dr. Fox: Wow. We digress, but you… So you are pregnant, and tell me how it went, the first pregnancy, just logistically, physically, other than all the feelings you’re having, how did it actually go?
Aviva: So I’m really fortunate where the pregnancy was relatively uneventful. I had several freak-outs where something was changing, like I mentioned, and it felt different or I felt like certain things were exacerbated, and they weren’t. I felt renewed itchiness in my feet, and that can be a sign of progression of PSE. And that was something that was alarming. But then I spoke to my sisters and they explained that, no, their feet were swollen and had been itchy. Just because their feet were swollen as pregnant person, and don’t worry about it. And it was this really interesting emotional balancing act of recognizing changes in my body and understanding that they may not be flags that something was bad, but normal morning sickness at the beginning, and that was really my only main material complaint through the pregnancy. Something that I was a little bit concerned about, it was a smaller baby. I was on steroids to control myasthenia. And that was something that had been flagged for me that sometimes steroids, which is ironic, because people on steroids are at risk of getting bigger, but fetuses are at risk of being smaller. And I’m sure you’d be able to explain the science behind that.
I can’t, but that was something that we monitored carefully, was just how quickly the baby was growing, if the baby was gaining weight. And my husband and I joked about it a little bit that, “Oh, we’re gonna have a small baby. It’ll make delivery easy.” But I did worry. And every exam that we had, I just held my breath to make sure that the baby was moving enough, breathing enough, because I wanted to make sure that all signs indicated that the baby was going to be healthy and unlike PSE, which there’s no risk of anything crossing the placenta, myasthenia, there is risk of autoimmune crossing the placenta and the baby being born with transient myasthenia. And that was something that scared me a lot.
Dr. Fox: Right. And my recollection is ultimately it played out well and you got to, I think, what, 38 weeks or something and we induced you because the fluid is a little low. Nothing too remarkable, but you got to pretty much full term. We’re like, “All right, little this, little that, it’s time.” Tell me about the delivery.
Aviva: I don’t think anyone can prepare you for delivery. And this is not a unique experience for me. I had no idea what to expect, but I also delivered during a really interesting time. It was the start of COVID.
Dr. Fox: Yeah.
Aviva: And start of COVID in New York, which was the headquarter of COVID in the United States. So everything was really weird leading up to the labor and delivery. And that just became a running joke where I was already the first for so many reasons and I was going to also be among the first to deliver during COVID. Fortunately, not the first, but New York was just unsetting its policy of restricting labor and delivery to the mothers. So we got really close to… I think I joked with you that I wanted to flee the state because I wanted to make sure that my husband could be there. Fortunately, we didn’t have to go anywhere, and I don’t think anyone would wanna deliver a high-risk mother from COVID country. So it’s probably a good thing we didn’t go anywhere. But it was I think 29 hours of being in the hospital and 4 and change hours of pushing. So it was not a quick delivery, by any means, but also relatively uneventful. And I’m so grateful for the medical team that protected me throughout my pregnancy and gave me really good counsel throughout my pregnancy, so that way I was okay throughout the labor and delivery process. I was able to go through a natural delivery, epidural-assisted, but light on the epidural because of myasthenia and pushed for four hours in spite of being a myasthenic. And I did okay, and the baby was born healthy and we all got to cry quite a bit.
Dr. Fox: Yeah. Tell me about that moment. It’s 29 hours in, so there’s probably smoke coming out of your ears when the baby’s born. But tell me about the moment that you delivered and how that went.
Aviva: This is probably the culmination of lots of trauma, lots of exhaustion, but I honestly was on the table half asleep in between each push. I think I was conking out for like 10 seconds at a time, just part normal exhaustion, I assume, part myasthenia. So I was just happy to be done. We knew that going to the NICU was going to be the next step for him, but we were told that we’d be able to spend some time with him, assuming that he was healthy and that everything on the Apgar scores and initial assessments were fine and we’d get some time with him and then they would take him to the NICU. But what wound up happening, and I’m not sure if it’s because of the number of hours of labor, because of COVID, because of his lower than expected birth weight, pretty much gave birth and they immediately rushed out of the room with our son. And I just had this moment where all of my fears came to the fore and I just lost it. And I think I said…I actually said, “Oh my gosh, what did I do to our son? Is he okay? What did I do to him?” I thought that something in either the way I delivered or something with my medical history had hurt him. And that was probably just thinking about moments in the pregnancy that were very, I wouldn’t even say traumatic, just very scary.
That was probably the scariest moment because he was out of my body, I was ready to really just embrace being with him in a totally different way, and he was out of the room and I was on the table just trying to get answers to figure out if he was okay and what had happened.
Dr. Fox: When did you ultimately realize for yourself that this gets good, all is well, “I’ve got a baby who’s doing great?”
Aviva: The good news is that the OB with me kept reassuring me, “Everything’s gonna be fine. He’s fine. He’s fine. We’ll call the NICU and figure out what’s going on, but he’s fine.” But as much as I was hearing that, which was reassuring, I didn’t feel that until we actually heard from the NICU that he was okay and that I was going to have the ability to see him. But this was also COVID, so it was really complicated because they would only allow either my husband or me to see him and we couldn’t go at the same time. So it was just a very strange labor and delivery experience overall.
Dr. Fox: It was so weird, that whole COVID. It was just such a crazy time. Now, you obviously would have, and were considered high risk, so to speak, for the COVID, right?
Dr. Fox: Because you were pregnant and you had autoimmune conditions and you were on steroids. How much of that worried you? We had people who were not so afraid of COVID, very afraid of COVID, some were warranted than others, obviously, but you certainly had quite a lot of reason to be afraid, specifically, of the virus. Was that something that really affected you day to day during the end of pregnancy or were you just like, “I’ve been on the cliff for a long time now, just add it to the pile?”
Aviva: No, we were pretty strict about COVID. Well, this was also really at the start. We’re talking about the first four or five weeks of COVID shutting everything down in at least New York, but slowly spreading across the U.S. So, people, in general, were pretty paranoid, and strict, and scared. And we just weren’t going anywhere, but no one was going anywhere at the time. So it didn’t really change anything for me there. I was worried about policies and how that would affect us becoming parents. Again, whether my husband was gonna be able to be in labor and delivery, if I was gonna be able to see in the NICU. They needed to keep him under observation for several days and my doctor said that I was too high risk to go to the NICU because of the… Not everyone going to the NICU was being tested and there were high COVID rates in the hospital. So I was able to see our son once his first week of life in the NICU before being discharged. That’s another funny story. I was discharged like 13 hours postpartum because there was too much COVID at the hospital, so I was safer at home. That, to me, was probably the hardest, was just dealing with COVID policies where my husband had to be the one in the NICU and not me, we couldn’t both be there.
I think it was more interesting, the COVID challenge was actually more acute for us postpartum where we were really strict about who we could have around us because of me still being high risk with COVID and then not wanting to put me at risk, bringing COVID into the house and also having this newborn who we wanted to protect and making sure that he was safe as well. So we were pretty strict about our own… Our risk profile was pretty extreme at the beginning.
Dr. Fox: Now, you obviously did this again because we mentioned that you had another kid, and I’m curious the second time around, how did it differ from the first time around in terms of whether it’s the fears, whether the guilt, whether the physical, emotional? Was it similar to the first pregnancy or was it potentially a little bit easier because you know you’ve already done this?
Aviva: It was easier thinking about how I would fare during pregnancy because I had done so well the first time, so I didn’t give that as much thought, especially because with autoimmunes, I think I spoke about last time, how there’s a two-third chance in terms of how women fair during pregnancy, but however you do on your initial pregnancy increases the probability of you experiencing that again. And I was stable and fully controlled during my first pregnancy. So not only did I have a two-thirds chance during the first pregnancy to experience that, but having experienced that the first pregnancy, I had higher probability of being stable second pregnancy, and I was. And so, just understanding the probabilities helped me and my husband make the decision that we wanted to try again and we didn’t think it was going to be that risky. I think we assumed that by the time we had our second COVID would be over, and that did not happen.
Dr. Fox: Nope. Nope.
Aviva: So, there were certain things there that we didn’t take into account and what that would mean in terms of changes to our risk profile over and over again and what that meant in terms of socializations and when to get, as vaccines rolled out, if to vaccinate, when to vaccinate, and me being high risk and balancing all of that. So there were some unforeseen challenges or things that we had to navigate. I guess in terms of things that didn’t play out the way that we anticipated, one of them was just not understanding how much harder it is to be pregnant when you’re already a mom because you don’t have any downtime. And that’s where I felt the biggest change where I was definitely more fatigued. And I don’t mean that in like a, I’m pregnant, therefore, I’m tired, but in a myasthenic way where I noticed sluggishness in parts of my body that I hadn’t previously and I knew it was just because I was pushing myself so much harder than I had the first time and not because of the pregnancy, but just because of my lifestyle, being a mom.
Dr. Fox: I remember toward the end, there were a couple of scares with the pregnancy that were not…
Dr. Fox: …present the first time around, and legitimate ones because ones that were potentially related to myasthenia. Fortunately, they weren’t. But talk about that a little bit.
Aviva: Yeah. So the first scare was one that I have learned is not something I should have been worried about, but my first pregnancy, we hadn’t tracked my liver enzymes the third trimester because those do funny things in your third trimester. But the second pregnancy they were tracked, which is now, in retrospect, helpful because now I understand what those baselines would look like in third trimester, but my alkaline phosphatase levels were above normal ranges. And that was the first time that they’d been above normal ranges since starting oral vancomycin several years ago. And so, that, to me, just was a trigger or like, “Oh, God, how much should I be worried about this? How much of this is because of pregnancy?” And it was one of those things that in spite of MFMs and hepatologists telling me it’s okay, I still worried because there’s no way to validate that it’s not from PSE until you’re postpartum, because until then, whether it’s from the placenta and uterus or from your… There’s no way to determine that in a blood test. So I just had to trust that they knew what they were talking about. In terms of the other scares, so in the biophysical exams that were being performed, our second child was not very cooperative. And it’s interesting because I felt that he was a much more active baby.
I felt him move a lot more and I was always surprised that I would go to the doctor’s office, go for the scan, and this became a repeated problem where every time I would go, he wasn’t checking the box on something. He wasn’t practicing breathing or he wasn’t moving, wasn’t moving enough. I think starting at like 30 weeks or so, he just wasn’t passing the biophysical exams. And so, initially, the decision was made, “Okay, so you had the first, let’s keep you for an hour and we’ll do it again.” I was doing stress tests sometimes in between and then it was like, should I be coming in more than a week? This is becoming a repeated problem. And for me, the fear was that this is indicative of him being fatigued, like myasthenic, and as active as he is sometimes, sometimes he’s just potentially oddly tired because he’s not passing these biophysicals. And it would just be so frustrating because in one biophysical, the first one I would take, he’d fail, and then an hour and a half later after the stress test, after eating some more, I’d have a second biophysical and he would pass and just not knowing what to do with that information and how worried to be.
Dr. Fox: Right. Ultimately, it worked out, right? So…
Dr. Fox: …you delivered. And how did this birth go compared to the first one?
Aviva: It was night and day difference in all the positive ways. It was going in; everyone understands what COVID is. So it was a much less scary experience in that regard. It was also, I think the labor and delivery was about 14 hours. And the OB mentioned to me, “This is gonna be so much faster than your first. You’ll see, it’ll be half-hour max.” And when I started pushing, she’s like, “It’s gonna be two pushes.” And I laughed because last time it was four and a half hours and three pushes later, the baby was out. So she was off by one. It was three pushes in total and it was…
Dr. Fox: “Two more. Two more pushes.” I’m sure is what she said.
Aviva: That’s probably what she said.
Dr. Fox: There we go.
Aviva: But it was completely uneventful. I felt strong throughout and the baby was still going to have to go the NICU, but we got to spend some time with another boy, so with him, before he went off to the NICU. It was a much more celebratory experience.
Dr. Fox: Look back and where you are now and where you were before this started. And, obviously, it’s totally different, right? Before it starts, you’re thinking about getting pregnant. Can I get pregnant? Is it safe? And you can’t, you can, and all this, and now you’re running after two kids and not thinking about that. But how are you changed as a person because of this? Whether it’s something like an outlook on life or just priorities, in a certain sense, is there anything about this whole crazy, amazing story of yours that has changed you as a person?
Aviva: Firstly, I’m just so incredibly grateful. I’m grateful to my family for their support and for being willing to take this huge gamble with me. I’m grateful to the medical team who made all of this possible. I wouldn’t have made any decisions to try to have a kid without all of their sign-off. And they all continued to be available to me throughout the process, and whether it was from an emotional support standpoint or truly medical standpoint, they were incredibly valuable and impactful. I believe in God. And so whether someone believes in God, or providence, or whatever, I am so grateful that I was blessed by God to have this experience of becoming a mom and for that to be something that was achieved without catastrophe and that we’re all healthy. But in terms of major changes, I’d say the same way that I went into pregnancy and experienced pregnancy with this looming guilt, like, what if I had done something wrong or selfish or created bad outcomes, the fact that I’ve been blessed with such positive outcomes is a reminder that, yes, we are not in control and bad things can happen.
And I’ve experienced my fair share of really bad news. But other side of the same coin is amazing and beautiful things can also happen and unexpected things can also happen. And it’s so easy to get trapped by all of the scary things, but there’s also… Excuse me, there’s also really incredible number of blessings and positive outcomes that can be achieved or experienced, and those shouldn’t be overlooked. And I think it’s easy to be a little bit paralyzed by fear, but for me, it’s also to remember to be inspired by the opportunity to see beautiful things happen.
Dr. Fox: Wow. Amazing. What a great way to finish this story in this podcast. Aviva, thank you so much for sharing your stories. Really amazing. And I appreciate it very much, and I’m sure our listeners do as well.
Aviva: Thank you, really appreciate it.
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