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#083 - Sarah Di Gregorio


Sarah DiGregorio Incubator Podcast

Bio: Sarah DiGregorio is a freelance journalist who has written on health care and other topics for the New York Times, The Washington Post, the Wall Street Journal, Slate, the Village Voice, Food & Wine, and BuzzFeed. She is at work on a forthcoming cultural history of nursing. She lives in Brooklyn, New York, with her daughter and husband.



 

The transcript of today's episode can be found below 👇


Ben 0:54

Welcome Hello, everybody, welcome back to the podcast. Definitely. How are you today?


Daphna 1:03

I'm good. You know, we had a chaotic week. But we It's always refreshing when we get to speak to parents and interview parents. So I'm, I'm feeling refreshed just by having this opportunity.


Ben 1:16

I'm very excited about the guests we have on today because it's not just a parent. It's an author. I love talking to authors and discussing books. So without further ado, we're going to introduce our guests for today. And it's Sarah De Gregorio. Sarah is a freelance journalist who has written for various publications including the New York Times, Wall Street Journal, The Village Voice, Food and Wine Magazine, food and wine BuzzFeed parade, and several, her work has been included in the best American food writing yearly anthologies three times, she lives in Brooklyn, New York, with her daughter and her husband, she is the author of the book early that we're going to be discussing today were inspired by her harrowing experience giving birth to a premature daughter, she writes a compelling an empathetic and empathetic work that combines a memoir with rigorous reporting to tell the story of neonatology and to meditate on the questions raised by premature birth. Sara, thank you so very much for being on with us today.


Speaker 3 2:07

Thank you so much for having me. It's a real pleasure and an honor. Well,


Ben 2:11

the pleasure is all ours. And before we begin, I wanted the way we usually work with authors is that for anybody that hasn't had the chance to pick up your book yet? And if they haven't, then they should. Can you tell the audience briefly a little bit about what the book is about? And what prompted you to put pen to paper when it comes to the topic of prematurity?


Speaker 3 2:34

Yeah, absolutely. So that's kind of a it's kind of a long story. But basically, what happened was that in 2014, I gave birth to my daughter Mira at 28 weeks as a result of intrauterine growth restriction. And we were very fortunate in that we got excellent care. And Mara did well. And she was in the NICU for two months, and was discharged. And so much of that experience, for me was profound disorientation and a sense that I, I didn't always understand what was happening. It was she was my first and only child. It was my introduction to parenthood, I really felt like I was dropped in the middle of a world that I did not understand, and that my child's life was in danger. And so in the aftermath of this, it became clear to me pretty quickly that there would never be an answer to why this happened to us, you know, why is why me? Why did my placenta fail? Why did she have to go through this? Why was this her introduction to life on Earth? But as I got a little farther away from it, I started to wonder about it in a different way. I thought, you know, one in 10 babies are born early, how can that be? How was it that I didn't know very much about premature birth when I myself was a preemie, and this is such a common experience? And so as a journalist, I started to ask these questions. Like, you know, what does it mean that babies like Mira are now more than likely to survive? What does it how did we get here? Why are some communities more likely to give birth early? How is this tied into structural injustice in our in our country? It turns out that almost everything has a prematurity angle, which was a big surprise to me. That you know, it's a it's something it's a it is an experience that touches almost everything about our lives. And so even though people don't realize it, and so those questions, unlike the question of why me do have you know, are able to be interrogated do have stories and richness that I could investigate And so I started to write about our experience. And I started to try to do some reporting about the bigger picture. And I was lucky enough to find an editor at HarperCollins, who believed in the book. And that's really, you know, the book is, is about our experience of premature birth my family's experience, but also about what premature birth has meant and means to families and communities and actually to everybody. It's a very general description that that was nobody


Daphna 5:37

sums it up, for sure.


Ben 5:39

Well, one more question about that. How long did it take? What was the gap between discharge home and and starting the writing process?


Speaker 3 5:46

Yeah. So Mira was born in 2014. I didn't really start working on this until 2016. I got the book contract in 2017. And then it came out in 2020. In January of 2020. I was working on it full time for about two years.


Ben 6:06

Yeah, and we'll talk about that, because it's a very well researched book. So yeah, go ahead.


Daphna 6:10

No, I It's interesting that I've been asked that question, because I always wonder. And it's not it's not the same for every family, obviously. But when can families even start to, like, revisit the experience, you know, because you, you mentioned this at numerous times in your book about how much it takes from you, right? In that moment. And then in the years following, and how much families carry with them after a NICU admission. I mean, we like to quote things from the book. At some point in you, you wrote, it hurt me physically to look at mirror, I found myself taking one painful breath, and then another unlikely to do anything except live from one minute to another. And I, I sense, that's how lots of parents feel. And so. So it was helpful, I think, to hear about, you know, what, when, when were you able to, like come back and even start to think about the, you know, the experience?


Speaker 3 7:20

Yeah, you're right. It took me at least a year to be able to really even function in a way that allowed me to think in a bigger picture way. I struggle with anxiety in general. And the experience of being in the NICU really brought that up for me. And so, I, I, yes, that passage that you read, it's still it's still with me, I can still remember that it really, it hurt. It hurt me to look at her because I felt that she was so vulnerable and uncomfortable, and that she shouldn't, that this, that she should be protected, and that she wasn't. And when we brought her home, we had a number of you know, I want to always say that we were so fortunate because we were so fortunate that she survived that she has been well. There were a number of different medical issues that kind of constantly needed to be followed up on. I felt like we were in sort of a constant state of of hyper vigilance for at least a year. And, and then at that point, actually had this I had one moment when I was at work. And I suddenly felt like I needed to write about it. And it was like a physical. It was a physical feeling that I had to it was almost like I use this analogy. It's kind of gross was almost like I needed to vomit. And I just started writing and it was like I was ready to think about it again. And I was ready to think about it in a big picture kind of way. Yeah, it took me at least a year.


Ben 9:11

I think what's really interesting about your writing is that you throughout so there in the book, there's your story, and then there's this this journey you're taking where you're learning about neonatology. And so I feel like you could have easily polished a lot of the experience that you went through yourself, but you write it so raw, and it's so good, because you are very honest in how you felt about many different things. And I think the way where I would like to start with that is when you describe the NICU consult and you and you mentioned that this is your first introduction to neonatology and, and you're so frustrated with the with the consult, the way it goes and all this information that is being valid To you, and how I think you do a very good job writing about where you as a parent, find yourself physically and emotionally, and where the consultant enters the room and how these are two different levels. And and you're very forgiving because you do not hold any grudges or you don't have any issues with the person doing the consult. But I'm wondering if you can tell us a bit if you can tell our audience a little bit more about how that experience went and and I wanted to ask you a few more questions about the NICU console.


Speaker 3 10:32

Yes, thank you for bringing that up. Because actually, that's something that I think about a lot. So our NICU comm consults it happens after our 28 week scan, I was admitted to the hospital because our daughter had fallen off the growth curve. And this of course, was the thing that we had been fearing because I had had bloodwork that indicate that had I had low pap extremely low hep a, I was getting gross scans. The day before the 28th. We started, the scan indicated she had stopped growing, they sent me straight to the hospital where I got steroids. I got a course of magnesium, which is truly awful. And, and then the next morning, this I think he was a fellow Yes, he was a fellow. He came up a neonatologist, he came in from the NICU to sort of tell us What to Expect When You're Expecting a premature baby. And what he did was really kind of lay out every single complication possible for a premature baby. And so, you know, that really was my that was my introduction to what prematurity meant. So he mentioned, of course, he mentioned you know, lung disease, he mentioned neck, he mentioned brain bleeding. Yeah. He mentioned in that moment, you know how likely it was that she could survive and be, quote, unquote, disabled. Meanwhile, I was still pregnant, we didn't really know when I was going to give birth. And so this was all hypothetical information. And I think that the goal of that was to orient us so that we wouldn't be surprised later if, you know, I had a an emergency C section that day. And something terrible happened that someone had already told us that this was a possibility that these terrible things were a possibility. And those terrible things were a possibility. However, I am thinking about this now, I object to the generality of the information. You know, I think that there is it's very important to be honest with parents, parents don't want things sugar coated. parents really want to know what's going on in general. But when you give a wide range of hypothetical outcomes, all of which are truly disastrous. That's a very, very scary place to start. And so that's where I started, I was like, This is a disaster, she's quite likely to die. And that was that colored everything for me from then on forward.


Ben 13:19

I think this is so important, what you're describing, because very often neonatologist will will be grudgingly go do the consults and not realize how important it is and what kind of like you said that this is an introduction to prematurity. I want to say that there's something really to be said about the fact that it's first of all, called the consult, I think it's not really a consult, I think if you are expecting a 22 week or 23 weaker and you do have to make a decision regarding resuscitation, then yes, we do need to consult, give you all the options, and then you can make a decision, but when you're dealing with 2526 2728, and so on the resuscitation is going to happen. So I mean, the way I approach the consultation is let me walk you through what will happen immediately after birth. So that while you can't move, you know, the steps and then after after that, we'll we'll sit down and we'll talk but I think this is very interesting what what you're describing, and I think many, many providers should pay attention to that. Now. The reason I'm asking this question, and the reason I'm using this as a as a as a jumping board for something else is because you are a very rational and pragmatic person you like numbers, you like stats, and that's what I was saying about the way you write is because what you do seem to show that while you were going through the experience of the NICU, you I don't know if you were interested in knowing that. Right? You were so at some point in the book you say that I want to talk about my fears about disability the future. I did not all my conceptions about the future had evaporated. And I thought that that's completely irrational, but perfectly normal if you're a parent dealing with this, and so I think after the fact after you go home Um, you then see the statistics, but I'm wondering if you would have welcomed these statistics at the time that you were in the hospital?


Speaker 3 15:07

That's a good question. I, I did crave knowledge in terms of, you know, I was so confused all the time. And I found myself trying to ask questions in a way that would get me kind of the information that I wanted and kind of constantly being frustrated by that. I, I think that you know, some families do want numbers, I think I would have liked to have a number, the one number I did ask for, was, what are her chances of survival? Because I had just read a book that had indicated to me that 20 week, babies have a 90% chance of survival. I think it might be even a little higher than that. But I said, Well, she has a 90% chance of survival, right? I was kind of holding on to that. And he said, well, she's so small, she's more like the size of a 26. Week, baby. So her chances of survival would be somewhere between like, a 26 week baby and 28 week, baby. And that kind of information in that moment. I was like, oh, so like, you know, it really flummoxed? me because I was trying to do the numbers in my head, like, Okay, well, is that like, at 85? Like, what are we talking about? But the way that that information was presented to me was so frightening. Because there was no acknowledgement of like, you're right, your baby is more than likely to survive, like, yeah, information that you have. The gist of that information that you have is correct. It was more like, well, and I was like, oh, okay, I can't I can't even go here. Now, because it's just too frightening. I would have liked for I would have liked to receive statistics that were contextualized in a way that made it easier for me to understand what we were up against. So at some point in that consults, he said something like, you know, your daughter has maybe like a 5050 chance of being disabled. And I didn't understand what that meant, in terms of what do you what kind of disabilities do you mean, and I didn't have the capacity at that moment to dig into that, like, what I didn't have, I guess I did have the knowledge, I did have the desire to have the numbers. But what I was unable to access in that moment, was to ask a deeper question about context about what words mean, when you use them, what does disability mean, I couldn't access that part of myself in that moment. And you're right, that is something that, as a journalist, I use that a lot. I want to understand. I really want to understand the numbers and the realities, and be able to translate that for people. But it was the translation that was lacking. And I really needed that from the doctors in that moment. You know, I needed someone to say like, a lot of premature babies need physical therapy for a couple years. And that classifies them as having a disability. You know, if that if I had had some context for that, that would have taken my anxiety way down. But instead, it was the sort of these numbers that that only served to terrify me. Yeah.


Ben 18:23

I had an attending who used to say, think about what do you want from these parents? Like they've done everything, right. They're here. They're following the advice of their medical team. They're putting everything in your control. They have no control over anything. At this point. There's no like all your the goal. My attending said the goal of the NICU concert is to reduce their anxiety as much as possible. I said, so that that echoes what you're saying? So yeah, go ahead. Yeah, I


Unknown Speaker 18:47

didn't mean yes, no, no, not at all. I agree with you.


Daphna 18:51

No, I I mean, I really want to underscore what you guys are saying, because we have a lot of trainees that listen. And I think they are taught that like, the konsult. That prenatal visit is the time to like, give all the information and you don't want to leave anything out. And you don't really want to be wrong. So right, we give these very nebulous details. And I think what I hope that at least our trainees and our learners will take away from this is that that console is particular is very different depending on when you are visiting families. So like Ben mentioned, if this isn't and you talk about it in the book, it's if this is in this period, variable time period where we really are going to ask parents to make some big decisions, and they need that kind of information. And if it's, if the decision has been made, maybe based on gestational age, then we just have to provide them with the information they really You need to know in that time period and comfort, right? Ben knows that perinatal consults one of my favorite things about neonatology. And that is our opportunity to align with parents and say like, we're going to be here and we're going to, we're going to be here for you. And then sometimes that's all we have to say. I wonder, I wonder if that would have resonated with you?


Speaker 3 20:26

Yes. I mean, I, what I really wanted in that moment was connection. And to know that this was something that could be handled that was handled every day. And that there was lot that although this is a very scary time, this is not what anyone wants, that you have plenty of reason to have hope that hope is evidence based, you know, I sometimes I you know, that you can't leave out like the evidence based hope. And to really convey that.


Daphna 21:00

Yeah, I know, sometimes sometimes. Doctors are afraid of hope. Yeah.


Speaker 3 21:05

Yes. I can see that. And it is. It is confusing to me a little bit. I think. It sounds like you know, when I've spoken to physicians, neonatologist about this, some of them say things like, you know, there are scenarios that haunt them. And I don't want to discount that. There are things that have happened that haunt them think times when they were surprised, and the baby and the baby did die, and the family was surprised. I've had families tell me about that, that they you know that the doctors had every expectation and communicated that they had every expectation that their baby would survive, and then their baby died, and they did feel misled. And so I know how I mean, I'm very cognizant of what a what a very difficult line this is for people to walk.


Ben 22:01

I wanted to ask you about the fact that prematurity seems to be running in your family. And how were you? Were you familiar with that aspect of your history when, when your personal delivery unfolded? And did that sort of give you preconceived ideas? Because sometimes I find that having a history of prematurity sometimes can be the best thing or the worst thing, because you have the example of a family that has had a 34 weaker in the past, and now they have a 24 weaker and the like, yes, or, or the baby was also premature. And it's like, no, this is very different. Or you could have the opposite, where a family has had a very premature baby, and now they have less premature, but they're still now all this PTSD is coming back. And it's like, no, it's okay, like this is going to be much better than the other one. So I'm wondering if that if that lineage sort of played a part in your,


Speaker 3 22:56

um, I think it actually, you know, I think if I had had a premature baby before, it would have been very different. But because I was premature. My parents didn't talk about it very much. And of course, both and both of my parents are dead. And I now wonder what some of that silence was about, especially for my mother. Because what was communicated to me was very light hearted. It was like, Oh, you were so small. You are so cute. You know, I was born around 32 weeks. I don't know the gestation. Exactly. I was three pounds. And I was brought to women and infants in Providence. And so, you know, obviously, that was a situation in 1979. But I think that as far as I know, I didn't have any respiratory needs. And so, you know, my parents kind of conveyed to me. This history as something kind of lovable and quirky. You know, you were so little, my father called me, chipmunk. My parents, we always had this joke about how I was clumsy. And I stayed back in preschool because I, because my motor skills were so bad. And you know, and so I had this conception of myself as like, Oh, I've always been clumsy. And I did not connect that at all to my premature birth. And of course, I don't have concrete evidence that that is why but it would it it stands to reason. So initially, at 12 weeks when I had this blood work done, and I said, Well, there's a chance your baby will be a little early, a little small. What I thought was like, oh, like me, that will be fine. But I didn't have a lot of context for it. But you know, I did subsequently find out that my grandfather and his twin were born When at home, weighing about one pound, and we're my great grandmother incubated them in their in her oven, and they survive. Yeah. So you know if there is a lot there


Daphna 25:15

I actually have a question particularly about being the parent of the baby who's like you said small, and you were small, but specifically for this subset of babies who are growth restricted in utero, because I think it does. As a neonatologist, who gives? Kook gives anticipatory guidance? I think we have that habit of saying like, it colors, everything about the admission, the baby who's who's very small, right? So we say, well, you know, they're so small, but look how well they're doing, or, you know, nutrition is going to be particularly an ongoing problem, because she was so small. And you know, and I wonder how that comes across to families, in your own perception about your baby, and like you said, what we teach children about themselves as they as they get older?


Speaker 3 26:21

Yeah, that's so interesting, you know, um, Mira started out her like, very, very small, and continued to be very small for a long time. She's seven now. And it was, I think, as a mother. This is very challenging and very emotional. The idea that your child is not being nourished that you didn't nourish her well enough for her to grow in your uterus. You've, I felt this is not based in reality, I felt that I had failed her. So fundamentally. And then, when she was discharged, I tried so hard to breastfeed, it just wasn't you know, she, she didn't have the we we didn't we, it was not possible for us, she was very difficult for her from a muscle tone point of view. And so I felt like I was continually forwarded in this desire to nourish my baby who was too small. There was a time when she would vomit almost every day. There was a time when the you know, they brought up the dreaded failure to thrive. Her pediatrician brought that up, we started giving her like, paediatric insure. And all of this really, is a, you know, a really big emotional challenge. I think for parents. I think they're, for us. We have thankfully, she has grown past it. And it's very obvious to me that actually, in retrospect, there was really nothing I could do. It was not about me, or my ability to properly feed her nourish or encourage her. Her body was on a timeline. And there was really nothing anyone could do about that timeline. And she's now average size, which I would have never believed that this could happen. But she is average size. But there are all these sorts of complications that I think can layer on themselves. You know, because she had, she had asthma, she had just a lot of inflammation, a lot of the time and this prevented her from I think, eating in a healthy way, because often then she would cough, cough, cough, and then she would just throw up and she just she had a lot going on in her body. So this is probably not really an answer, but


Ben 29:12

no, but you're saying something that I had a long I had discussions with Dr. Daniel Roush, who I worked with in New York, who was saying that an ability of a parent to feed their baby is one of the very few things that we can do to parent our child. We change their diaper, and we feed them and until they can talk to us. That's pretty much all we have. And when we remove this, it's a huge part of our role that's being taken away from us. So I resonate very vividly with what you're describing, but I wanted but you do, I think mentioned this in a way when you describe the helplessness around your situation in the NICU. And it's funny to me I mean, it's not funny. It's interesting to me how you you equate this also with the pictures that you're looking at of view in the NICU where you say, you look at your mom There's face in those in those pictures and you say the look on my mother's face is identical to my own across 35 years love, terror, exhaustion, same cocktail coursing through the vein of the most brand new parents, but something else to not guilt, but something close to it, helplessness. I mean, I feel like this is something that every NICU parents will resonate with. But I'm wondering, did you find any way to mitigate this helplessness while you were in the NICU, where you're watching your baby in the box really separated from you? Can you tell us a little bit how you overcame that?


Speaker 3 30:36

Yeah, that's a good question. I've been thinking about this a lot, because I'm thinking about family centered care on Friday. And thinking about that as really the goal of family centered care to support families and not feeling helpless to help them understand their essential illness to help them understand that their way of knowing is important, and that there are things that they can do. Did I have that experience? You know, unfortunately, not a lot, there were definitely I would say that kangaroo care was really one of the only things that made me feel like a, like a competent Mother, you know, because I could feel that she relaxed against me, like that was very obvious to me that she wanted. I felt that she wanted me to hold her and I wanted to hold her. And that was so powerful for me. And it did make me feel like there was something I could do. In our NICU, there were only three recliners for kangaroo care. And it was an open ward. And so there was a space issue that was sort of a resource issue, you could only hold your baby for three hours. If if someone else was using, you know, if those chairs were in use, when you could be there, you were kind of out of luck. And so those things were, those things were difficult. But I would say that, you know, kangaroo care was the number one thing when she started drinking from a bottle, I you know, this is an interesting thing that I think happens in a lot of NICUs, I had wanted to directly breastfeed, but it quickly became obvious to me or at least it was conveyed to me that this was potentially going to lengthen her NICU stay, and that she needed to drink from a bottle to get the amount of calories that would allow her to grow that would allow her to go home. And that was, um, you know, one more thing that kind of made me feel quite helpless. So, you know, those are things that I think that Nikki's could do, could do differently in supporting breastfeeding a little bit more without that sort of, you know, I don't know, you guys tell me like how, how real is that?


Ben 33:05

The definite media right now is that it smacks us, right. So


Daphna 33:10

you, you verbatim, reiterated what my my message was for our charge nurse meeting that we have this week. So I totally that resonates with me. And I think you've given us some real concrete things that we can do every single day, right? I think, again, you're well educated. You were doing the research. And I'm sure that you did some of your own self advocacy. But we have to ask parents every single day like do you want to hold your baby today? Have you held your baby today? I think you touched on another thing that's again, among my soapbox, that there's no reason we can't let babies start practicing at the breast way before you know we were going to let them bottle feed and let them let parents have that experience and work on oral skills. So I love that you mentioned that. And, you know, we like to give our listeners something that they you know, can take away. I wonder if there's anything he know that somebody did, or somebody asked you that, that empowered you a little bit or gave you some of that parenthood back that we can highlight that that hopefully somebody can take to their daily practice.


Speaker 3 34:35

Yeah, um you know, I want to reiterate, we got really good care and I really love the people who saved my daughter's life. I will say that the families the Family Centered ness of the care was a little bit lacking in terms of me being able to have hands on experience caring for Mira You know, one thing, one thing that kind of that kind of broke through to me at one point was it was just before me or was going to go home. So she was an open topped bassinet at that time. And I came in and I said to the nurse, can I pick her up? Can I hold her? And she said, that's your baby. You don't need my permission to pick her up. And I was like, Oh, my God, I don't. I really, I really, I loved that. She said that to me, because it seems so obvious to her that that's my baby. But also, I did wish that the truth was, I had never picked her up before. In the two months, she had been alive, a nurse had picked her up, put her on my chest and then brought her back. So I had never, I had never, I did not understand that I could pick her up that it would be safe for me to do so. And, and so that what that nurse said, did kind of break through to me, and I and I, I loved even just just a phrase, that's your baby. That's amazing.


Daphna 36:11

I have chills I that's, that's exactly it. How, you know, how can we how when we spend so much time telling parents that the important things that we're doing, like fluids, like procedures, like the incubator that have nothing to do with them? How do we give them back? You know, their opportunities to really feel like the parent? Not because it's something nice to do, but because you are the parent and you're taking that baby home? They're not going to stay with us forever, you know? Yeah, yeah, absolutely.


Ben 36:49

I want to touch on a topic because I feel like we're going to run out of time, and I'm not going to get a chance to but I want to talk to you about the concept of expectations. Because as a as a neonatologist, the NICU has. I always say that the NICU as professionals carves us in very in a very peculiar manner. And we we do know the statistics, and we understand what expectations mean. And our field, you allude to that in the book is very different from medicine. In general, if you go to any adult specialty, the goal of an adult specialty, at the very least, is to after your illness has gone to send you back to the baseline you were in before you had the illness. Now, our field has no baseline, it's only expectations. And we need to be realistic about our expectations. And we don't like to think of newborn babies as having limited expectations. So in the book, I'm going to quote you because it's just too good. You say when you're pregnant, it is natural to imagine your child as a perfect blank slate, unbound by any limitations. They could be anything an Olympian, an astronaut, it seems cruel to take even an ounce of potential away from a baby, or an early arrival into the world changes our bodies and minds in ways big and small, even on a cellular level. It is embedded in our psyches, and in our bodies in both literal and metaphoric ways. But the world writes on all of us whether we are born early or on time, the meaning we make of our lives belongs to each of us. I thought that's so powerful. And I am wondering, as a parent, how do you deal with this, with this bell being placed over your baby? Like, yes, your baby is just born, but we're going to need for you to moderate your expectations. Unlike any other parents who think their son or daughter will become the next president of the United States, you are being told, yeah, just just take it easy. How does that was about what is it like to go through this as a parent?


Speaker 3 38:54

Yeah, you know, it's terrible. It's really, really painful. Um, but I will say that I have come to think of it differently. I took it very hard at first. Also, I, I took the, the uncertainty very, very hard, and the fact that no one could tell me what would happen, what would be the ramifications for her. So many of the outcomes are not clear for years and years. And I struggled with that really very hard. But I have come to think about it a little bit differently. And it's it's not it wasn't easy, and it's not it's still not easy. The fact that some parents They are able to live with this idea that, you know, they can protect their child, I think that they can, you know, control what happens to their child. I don't begrudge them that. But I also know that it's an illusion for everybody. And I think that premature parents come to that sooner, it's a really difficult realization for every parent, it's, it's really painful, you can't control what's going to happen to your child, you can't protect them from suffering premature parents of premature babies that is in your face, from the moment that your baby is born, you're, I mean, I felt that she was suffering on some level, even though she was getting very compassionate care. And there was nothing I could do about it. And there was nothing I could do about, you know, what this might mean for her, all I could do was love her and do my very best for her. And the reality is, is that that's true for everybody. And I, you know, I wish I could have put it for a few years. But I do sometimes feel it's a strength, you know, I don't worry about, I don't worry about her standardized test scores. To me, it's like, you know, my daughter is happy, and she's, she can breathe now. And she has friends. And, you know, I want to say, as I say, this, this manifests itself differently for everyone, you know, some parents have children, who are, you know, who can't breathe, and who you know, and do struggle with pretty major things. And, you know, those, those families and those babies, those are real outcomes too, and, and their children deserve everything that every other child deserves. And all of the celebration that we put on preemies who survive and who you know who thrive, I just want to acknowledge that that's not always the reality. But for me, I have been lucky. And I have also tried to have it put me in a place where, you know, I am just happy that she's happy and happy that she can walk and run, I'm happy that she goes to school. And I know how strong she is, too. I mean, sometimes I'm like, man, look at this child, like, like she's done so much in her life. And so I try, even though it's very hard to give up control like that, and to know, you know that. To know that you can't prevent your child from suffering. I've tried to turn it into a kind of a strength. This I don't always succeed.


Ben 42:59

I think definitely this goes back to what Dr. Perry class was talking to us about where we forgot that children, babies could die. And I think the NICU remind you that this is a very real possibility, sadly. And so then everything is a bit shifted, where you become so happy with the most the smallest of victories, right? And, and for us as providers, it makes us so jaded, because when we say, hey, this baby will not become an astronaut, then my father is so so like the other kids in the newborn nursery. Anyways, the chance of being an astronaut is probably less than 1%. So yeah, but it is still very traumatic for parents to come to grips with with this idea that like, yeah, your child may not become the next president, because it is actually a very minut percentage of chance for anyone to achieve this goal. So but I think it's important, like you said to, I think this, this reminds us that some of the things that we take for granted are not always taken for granted by the parents, and we have to be careful on how we introduce these topics. Sorry, I'm rambling, Daphna. Go ahead.


Daphna 44:02

No, I this was thank you for sharing that because that is I mean, that's the lesson on parenthood, right for for everybody. And I wonder so much about how parents navigate life, after the NICU. And I understand medical appointments and things like that, but this perspective on parenthood and parenting, I wonder how you're able to connect like in the, you know, the mommy groups or the social media or the Mommy and Me classes when the perspective is so different.


Speaker 3 44:40

At first, I really couldn't, you know, I didn't want to I felt kind of like I think I write in the book. I felt kind of like a witch who had been to like a dark place. You know, I didn't want to show up with my baby and have them be talking about like, oh, did you breast or bottle feed and me being like, Oh, I tube fed. It just seems like really just so Oh, that's a the NICU is by definition, you know, such a hidden place. I, I felt that I didn't want to I, I felt protective of that. And I didn't I didn't want to shock people. But, you know, I think it's there are ways to connect with other families of premature babies. I haven't done I didn't do that so much. But I know there are some really good Facebook groups where people can sort of commiserate with each other or share, share strengths and share strategies. But yes, it was. It was difficult for me to relate to other people's parenting, and even things like, you know, I remember someone said something to me about, oh, they had never given their child Tylenol before. And they were just like, oh, but her body is pure now, and I'm gonna put and I was like, Wow, I can't relate to that. But you know, I'm, I would urge you to give your child Tylenol if they need it.


Ben 46:15

I'm wondering if if as a parent, we connect, because as providers, uncertainty has made us off for people to be friends with. When people tell me, Hey, next week, it's like next week is years away. Many things can happen. We don't plan anything. And I think as neonatologist we live we learn to live with uncertainty, because we know that things come up on in an instant. And and I think as parents, you do know that I think you come into the NICU and you're like, what is it going to be today? I am wondering if being discharged from the NICU, and were you able to live uncertainty behind? Or is this something that like us you're carrying with you now, forever.


Speaker 3 47:02

Um, I feel that we've gotten to a point now where so many of the major problems have been rolled out. But I, I feel just very, very fortunate that I don't live with major uncertainty anymore. For many years, we lived with major uncertainty, there was always a new era had physical therapy. Actually, Nero was just discharged from her IEP, she was a special educator, she was receiving special education services, thank you, and PT and OT, and, you know, suddenly, she doesn't need it anymore. But there was a long period of time where people would speculate about whether or not she might have mild CPE, because one side of her body was much weaker than the other side. She had very severe asthma for a long time, that was really extremely frightening. So we, you know, we'd be in the emergency room in the middle of the night, pretty frequently. And so that kind, I will say that, actually, the, the contrast between the sort of the physical, physical therapy needs and the asthma really made it very clear to me, I was like, I don't care if she's, if her if her left leg is weak, I mean, I don't if she, like, if she has mild CP, it's like, okay, but but she needs to be able to breathe. And so that was the things I felt like people are oftentimes really focusing on outcomes around CPE, around physical stuff like that. But to me, the worst thing was the asthma because we couldn't get it under control for a long time. And watching your child struggle to breathe just changes your life in in pretty terrible ways. But we, you know, again, we were lucky and she has grown out of it. And so, you know, living with uncertainty, I think, for us, in terms of her health, it has kind of dissipated, and I think it does dissipate for a lot of Lucky families. You know, after a couple of years after several years, for some people it never dissipates. But here we are in a global situation of deep uncertainty. And, you know, it's not something that anyone can, can escape. No, but I do


Ben 49:33

feel like we're better equipped to deal with it.


Speaker 3 49:35

Yes. Yeah. Well, you know, actually, around the pandemic, I was kind of like, Listen, you You all need it to be a NICU mom. Because I'm like, I have my stocks of hand sanitizer. I have my stocks of masks. I'm like ready for this?


Daphna 49:54

I want to ask about the pandemic. But what you just said reminds me that the The literature is pretty clear that the things that we focus on as, you know, neonatal care professionals, in the anticipatory guidance we give, misses the mark, like, we seem to be mal aligned misaligned with what is important to parents in the NICU admission, and then certainly after discharge. And I don't know, if you have any feedback or commentary about, you know, how we can, you know, globally do that differently.


Speaker 3 50:35

It's hard, right, because I know that all parents are different, and I, and what they want is different. And so it's a very, it's, it's very challenging, I would say that as specific as you can be, as possible to this particular child. It indicates to parents that you are paying attention to their child as an individual, that you care about their child as an individual. And, and also that, you know, there's, there's no need to bring up. You know, bad outcomes that might happen for which there is no current evidence is going to happen for this particular individual. And I think, you know, giving false hope, of course, is not good, but withholding hope. Because you're worried that something bad may happen is, is, can be cruel, because parents really don't know, they don't have context beyond what you've told them. Often, I didn't have context, I was afraid to Google things after she was born. And so, you know, if you say, well, premature babies, sometimes, you know, they have BPD, they have, you know, they have lung disease for all of their life, while you still have no idea if that's going to be relevant to a particular baby. I'm not sure that that's helpful information. So I guess, you know, in terms of, you know, obviously, if a parent asks about that, then they want to know about that. But I think that if, if there can be one thing, it's like, thinking about the baby, as an individual speaking to their individual circumstances, as much as you can. And I think that, that this is, you know, I was, I was thinking about family centered care. And I was thinking about, you know, if you go to someone's house, and they've just had a newborn baby, the way that you interact with that newborn baby with their parents in the house is like, you don't just like go pick the baby up and sort of say stuff about the baby and, you know, call the call to be like, Hey, mom, like whether, like you would have a profound level of respect for the parent and the, you know, the family in the house with the baby. And obviously, the NICU is different, and you're saving these babies lives. So that is different, but if there can be sort of more of a sense of, you're speaking about someone's child, you know, it's not it's not interesting to us from like a, you know, from a scientific perspective. You know, I remember one time a neonatologist said something to me about mirrors. Oh, she doesn't have much gray matter yet. And I was like, she doesn't have much gray matter yet. Like, I couldn't even begin I couldn't even formulate the question, you know what I mean? I just like let it drop. I was like, he Okay, she doesn't have much gray matter yet. Like, I, I didn't know about brain development and fetal brain development. That wasn't something I was familiar with. So, you know, if there can be an just more of an emphasis on speaking about people's children, specifically as, as these as, as somebody's child, and not, you know, not speaking in jargon or hypotheticals that may not be relevant to a particular family.


Ben 54:15

We're running short on time. And I have two more questions I wanted to ask you. So the first one was, we haven't talked about your the work you've done in researching the field of neonatology, which is pretty much the second half of the book. Yeah, we didn't even it's fantastic. You I think you were fortunate to speak to numerous spectacular physicians, Professor de Gama, Professor Mercurio, to just name a few are phenomenal. I know them. They're excellent. Now, my question to you though, is you leave the NICU and I think for every parent for anybody that enters the NICU for the first time. It's probably one of the most technologically advanced units in the hospital. So you're like, Wow, this is like the tip of the spear of medicine. Then you do this legwork of Luke Get to history. How shocked were you at how much of a crapshoot our field has been for the past 20 years, and all the weird things we've been doing to babies?


Speaker 3 55:14

Well, no, I mean, honestly, my takeaway was how utterly incredible it is that we have arrived at this moment where babies like Mira are more than likely to survive, especially, you're right, given that, you know, it was catches catch can like people, people trying whatever they could try. But also there was so much beauty in that in this idea of the real change of mindset where it was suddenly like, actually, we should be doing more and I think we can do more actually for these babies. And that, that being the, you know, the trajectory of neonatology being very messy and pretty weird. But like, you know, being full of people who are so fired up with, with conviction that like that, actually, we can do more was beautiful to me. And in fact, you know, I had a couple people say to me, like, you know, compared to like obstetrics, like obstetrics is kind of in the dark ages, compared to neonatology. It's like, you know, and I'm not trying to denigrate it. There's really not much they can do. It's like, you got to get them past 24 weeks. And then like, because there's other you know, there's just so little that can be that can be done. I had people ask me, Well, why couldn't they fix your placenta? It's like, no one can fix a placenta, like there's nothing you can do. So,


Ben 56:49

before we do the repercussions of upsetting our OB colleagues, we do owe them a debt of gratitude. Because babies is far. Thank you. The inventor of the incubator was an obstetrician. So that's, I mean, this is us just doing damage control on our end, Sarah, don't don't mind.


Daphna 57:12

I wanted to ask you, Ben, and I talk about this a lot. And you, I think, describe it a few times in the book. And so I'll share some passages about just this life in the NICU. You know, the NICU is both futuristic and primal, which, you know, relates to what you're talking about, about the technology and kind of the circuitous way that we got to where we are, she was not so much alive, but in limbo, and we kind of think about the NICU stay, is this like, suspended reality? And and I wonder if that's how parents experience it also.


Speaker 3 57:50

Yeah, that's a good way to put it as a standard reality. Yeah, it is like the outside world kind of doesn't exist. And you are in this very liminal space where your child is being kept alive by machines. And I felt, you know, and I came to realize that there was a brain development reality behind this, but of course, I didn't know anything about that at the time. I felt that she was neither here nor there. It I felt that my interactions were with her. We're not the interactions I have experience with newborn babies before. Of course. And yeah, it feels like a suspended reality kind of place where, you know, it's very, it has a there's an atmosphere about the NICU that I have never experienced before sense. And I had, you know, I had been in ICUs before like, with my mother was nothing like that. There was nothing I could do still nothing I could compare it to. It's like, you know, it's like a nursery on another plane. It just isn't. There's an energy about it, this full of potential but also full of, you know, the possibility for emergency and for pain and it would struck me as highly highly charged, and our NICU as a ward style NICU. And so I was seeing that, you know, the baby next to us passed away, sadly, I saw, you know, I saw babies code I saw, I saw babies grow up and go home. I mean, you know, all of these things. Were happening all around me. And I felt it on a level that I don't think I can quite describe.


Ben 59:59

Okay, so my life questions. I think through the book, there's, I'm wondering if this is because of the timing at which we're writing the book. But there's definitely a lot of anxiety when it comes to neurodevelopment. And how is the how is your going to develop? And, and there is, I believe, I perceive, especially when, when she's not yet like hugging you like the fear of autism, right. And I can tell that early steps clinics have mentioned to you that the diagnosis can be done as early as 18 months, which is terrifying to hear, because it's like, What do you mean, like, I cannot find out until she's two years old this is but and that, I think is very normal. But then, in the epilogue, at some point, she does hug you when you can, and I you can the way you write it so well, because you can feel this relief of this is this is happening, thankfully. But you mentioned something that says that this, this felt like a mutual forgiveness. And I am wondering if you can tell us a little bit more about that. Because on the one hand, I've I'm very familiar with the unfounded guilt of parents towards their printed babies. And I say unfounded, because there's no reason for them to feel any guilt. But that was a bit novel for me of feeling that the child had to forgive you in a way. And this may be unfounded as well. But I'm curious to hear what your state of mind was.


Speaker 3 1:01:32

Yeah, you know, it's funny, I actually wasn't I wasn't worried about autism because I never felt that she was unengaged with the world. Um, but I did feel like she was wary of me, or have, I felt that she was I felt that she was disinclined to relax. I mean, she has never been a mellow child, she's not a mellow child, and she


Ben 1:02:06

would you raise them on I


Speaker 3 1:02:10

was a real problem for me. So I felt that maybe the bond between us the specific bond between mother and child had been damaged irreparably, I wasn't sure if it would ever be the way it would have been. And you know, that had to do with as we were talking about feeding, breastfeeding, the way that she didn't want to snuggle when she was eating, she would just want to lay on the couch, away from you while you fed her at arm's length. And so there were these very sort of fundamental and what I thought of as universal interactions between parents and babies, holding them to feed them, you know, snuggling, she didn't seem very interested in as a baby. And I just wasn't sure if there was something about her entrance into the world and what she had experienced. I knew it wasn't on a conscious level, but I just wondered if there was something about that, that had changed her psyche and her ability to, you know, bond with me and maybe my ability to bond with her too. And then when she did, she was about 18 months. And suddenly, she started to want to snuggle like, you know, like, snuggle you wrap your arms around her that she would be feel comfortable that way that that would be a source of comfort for her. And I felt great relief because it felt like we had mended something. And that I felt like I felt that we were connected again. And I had felt like we had been severed in a traumatic way. And that we had together really both of us had to go through something and had to just keep the establishment of our relationship was in these acts of caring and being together and that at some point I felt like you know that this this was that this had mended and it's possible for me to really be her mother because for so long, I did not feel like her mother. I felt like I had nothing to do with her having survived. I mean, if it had been up to me, she would have died. That's how I felt.


Daphna 1:04:39

Yeah, I'm, I'm struck by just how you know that this is a NICU experience. I mean, changes your whole, like personhood, really. And, and and I'm hopeful you can just speak a little bit about you know how it changed you? I can see in your writing how it's changed your even your career. You know, I wonder about, you know, professional moms who have this experience and then how it how it changes even your like professional trajectory? If it Yeah, I think that will be my last question because I have one


Ben 1:05:23

more. Sorry. Okay.


Speaker 3 1:05:29

I'll try to make it shorter. Maybe I'm so long winded sometimes. Um, um, has it changed my personhood? I did. You know, I was a very career focused person. And there was nothing wrong with that. But I do remember there being this one moment in the NICU where I was like, I was trying to get an extension of my maternity leave. And I thought I did not care if they give this to me, obviously, this comes from a place of great privilege, because if they had fired me, I would have just been fired. And that would have, we would have made it okay. But I just suddenly I didn't, I didn't care about any of it. I thought, you know, they can I just, I don't care. If I become the editor in chief of a magazine, I'm just, I'm just, I just don't care anymore. It was very, very sudden. And it, it changed my sense of how I want to spend my time. It, it really took away a lot of the sort of pressure I felt to be ambitious. And it gave me permission. And this has been very sort of like, it's a long process and one that is not done. But I I'm a journalist I went to I have a master's degree in journalism. And, you know, I've always done reporting. I'm mostly focused on food, food policy restaurants. And I loved that work, actually, I loved it. And I realized after she was, you know, a couple years later that I wanted to apply those skills to thinking about what is healthcare like, for people? What does it mean, M. and N I am I feel that it's something I'm meant to do. I, my both of my parents were very ill as I was growing up, both of them died relatively young. So I have always been, I've, I've always been sort of in healthcare settings as a caretaker. And I realized that this gives me a valuable perspective. And I was able to give voice to that a little bit more than I would have. I just felt like I didn't care as much anymore about I just I was, I felt less limited, because I felt the stakes were lower. For myself as in my career.


Daphna 1:07:58

I appreciate the lesson in priorities. And I will defer to my colleagues for the last Yes, it's related.


Ben 1:08:04

That's good. Yeah, it's good. It all worked out. But I wanted to talk to you specifically about something you mentioned in the book repeatedly, which is that thanks to your husband, continuing to work, you had continued health insurance, which again, I'm not gonna go to the disaster, that the fact that this is the way it is, whatever, but can you, can you, we've given you a lot of credit, but I feel like the also, the hero of this story is the spouse that has to go back to the normal life, all the while this is happening, and this pressure that if I don't have this, then we can't pay for the bills of the baby in the hospital. What is how do you? I mean, just just tell us a little bit about what is it like for the spouses who are under under a different type of pressure, but tremendous pressure nonetheless?


Speaker 3 1:08:56

Oh, yeah, absolutely. So my husband Amol is, is a wonderful, wonderful person, and he works for CVS, or CBS News. And, yeah, he has his his job provides our health care. It's a deep injustice that the way our healthcare system works in this country. But I think that he, it's been, it's hard for him. And I think it's hard for spouses, or fathers or for non gestational parents in the NICU, because it is often all about the mother or the gestational parent and the baby. And, you know, I think that's an ongoing challenge for our country as a whole because as much as NICUs can do the really, really good work, or the really necessary work of trying to send your families. I hate to go you know, I hate to go bigger on this, but it's kind of the only answer to the question which is that you If we don't have paid family leave, and if we don't have health care for all, there's always going to be something pulling parents out of the NICU. And whether it's, you know, if it's a single mother, it's the single mother, if it's, you know, if it's if, if the one spouse like us, has the better paying job has the health insurance, it's going to be them. And they do pay a price for that. So, you know, it was hard for him, I think, to feel capable. It was sad for him that he couldn't be there, he felt guilty in a different way the night did. Um, and, you know, I think he felt just, I think he struggled to feel like an effective father. For a while, not now, but you know, when Mira was a baby, and it also it, it draws, you know, in some ways, causes can cause some conflict between the mother or the gestational parent and the other parent, because you feel like, Oh, you're not here. For me, I know that you're out there getting our health insurance, which is absolutely critical. But at the same time, I'm alone. And so it just, you know, it's it sets people up for very difficult, you know, very difficult dynamics that then have to be sort of slowly dealt with. And I think the only way to, to really tackle this problem is to, you know, support families with paid family leave with universal health care. I mean, there's just no, there's just no other, you know, there's no other way.


Ben 1:11:43

Absolutely right. I'm very happy. I got to ask that question. I'm done. Daphna.


Daphna 1:11:46

I'm very happy you got that question is. So Sara, thank you. This has been a wealth a real, I hope our listeners feel this was an education for them. Because even after reading the book, and speaking with you is certainly been an educational for me.


Speaker 3 1:12:06

I concur. Oh, I I'm just honestly honored to be here. And I appreciate your great questions and being able to speak with you.


Ben 1:12:14

Thank you, Sarah. Have a good day, Daphna. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter at Nikki podcast or through our website at WWW dot v dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you


Transcribed by https://otter.ai


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