Early: An Intimate History of Premature Birth and What It Teaches Us About Being Human

Carrie Coogan

Good evening, ladies and gentlemen. Thanks so much for being here tonight. I'm Carrie Coogan. I'm deputy director of the Kansas City Public Library. And thank you for being here on this exciting week in Kansas City to talk about an important topic. So while premature birth is nothing new, it is only in the last 80 years that neonatology has grown from a fuzzy future possibility into a fully understood and necessary discipline. In just two generations, the medical world has gone from having essentially no treatment for preterm babies to being able to save infants born that are less than three months old or even weigh less than one pound. Tonight, mother and journalist Sarah DiGregorio, inspired and changed by her experience giving birth to a premature daughter, wants to tell the important story of this groundbreaking science and the many people it has touched and the lives that she has saved in her book, which you can purchase outside, called Early. Sarah will be joined tonight in conversation with Dr. John Lantos. John is director of the Children's Mercy Hospital Bioethics Center in Kansas City. And prior to moving to Kansas City, he was a professor of pediatrics at the University of Chicago, where he was chief of general pediatrics. He's also published hundreds of peer reviewed articles and many books, including The Lazarus Case, Neonatal Bioethics, and Do We Still Need Doctors? We are extremely lucky to have Children's Mercy Hospital right here in Kansas City. The American Academy of Pediatrics has designated Children's Mercy as a level four NICU. This is the highest designation available and means that babies have access to a full range of more than 400 newborn medicine specialists, highly trained pediatric nurses, and anesthesiologists and specialized equipment for our tiniest patients. Children's Mercy is the only hospital between St. Louis and Denver that can provide us this level of care. And just one more interesting note that some of you here may know about that shows you that this is a hospital that really knows babies. You may remember a national news story around summertime of last year. The neonatal intensive care nursery, the NICU, at Children's Mercy in Kansas City, Missouri, had an impressive number of 36 pregnant nurses, all due in 2019. Wow.

Carrie Coogan

Please help me welcome Sarah DiGregorio and Dr. John Lantos.

Sarah DiGregorio

Thank you so much, Carrie, for such a nice introduction. And thank you to Dr. Lantos for being here with me. It's

Dr. John Lantos

a pleasure. Thank

Sarah DiGregorio

you. And thank you all for being here. I really appreciate it. I have family in Kansas City, so it's always just lovely to be here. I'm very grateful. So I'm here tonight to talk to Dr. Lantos and to talk to you all a little bit about my new book, which is all about premature birth. I thought what I would do first is just kind of take you through some of the stories that I found most compelling as I set out to understand this topic that really remade my own family's life. And then Dr. Lantos and I will have a little conversation and, of course, be very open to any questions that you all have.

Sarah DiGregorio

So my daughter was born in 2014, and about a year and a half after she was born, I emerged from this kind of fog of anxiety that I had been enveloped in since she was born. And I looked around and I thought, what happened? And there were a number of different ways I could set about trying to answer that question. Actually, the first thing that I did was start to read Dr. Lantos' books and then send him a cold email being like, hello, I have some questions. Would you be willing to speak with me? And he very graciously got on the phone with me. So that was sort of where I started. But there were a lot of different ways in to this topic. It's actually a very, it's a shockingly deep and complex topic. So I could... read studies and try to understand them. I could contact the authors of those studies and ask them if I had it right. I could look into the history of neonatology and sort of try to understand the evolution of how we have cared for premature babies or not cared for premature babies.

Sarah DiGregorio

And I could look at the rates of premature birth in the United States and see that they have been going up for the last four years and we do have the highest rate of premature birth in the industrialized world. And so that, to me, suddenly I felt much less alone. Clearly I was not at all alone, but also felt galvanized around that in the sense that I think that we could do better in terms of maternal and infant health in this country. So there were a lot of different ways in. And I also noticed that premature babies have often served as a blank canvas for their society's projections, so the way that we project some hopes and fears and anxieties and power struggles. And these things have kind of persisted throughout time. So I'll tell you first a little bit about my own family.

Sarah DiGregorio

This is my grandfather and his twin, and that's actually me in that incubator. I had not given premature birth much thought when I got pregnant, which in retrospect was quite an oversight on my part because my grandfather was born in 1921. He and his twin apparently were about one and a half pounds, and my great-grandmother incubated them in a very low temperature oven, which... is amazing and was actually surprisingly common. It's something that has persisted throughout time. If you give birth to a very, very small baby, a very common impulse is to find a way to keep that baby warm. So that's what my great-grandmother did. And then I was born around 32 weeks in 1979. I needed an exchange blood transfusion at birth because I was quite jaundiced. I don't know a lot of details about my own birth because my mother died relatively young when I was in college and I never asked her the questions I would have asked her as an adult. But through all that, I really hadn't thought much about this phenomenon that was threaded through my own family. when I was 12 weeks pregnant, I was told that because of an abnormality in my blood work, that my daughter might come a little early, a little small. And when I heard that, all I could really think of was the ways that my own parents had sort of made light of my own early birth. They had said my mother thought that I was just a bad case of food poisoning, that I was a bad batch of spaghetti, and that my My father had thought I looked more like a chipmunk than a baby. So I remembered the ways that they had told me that story, and now I think that maybe those jokes may have concealed some pain around that experience. My book starts like this. This isn't the story of one birth, it's the story of millions of births, but for me, it started with Mira. When I was starting my 28th week of pregnancy, Mira was diagnosed with intrauterine growth restriction, which essentially means that

Sarah DiGregorio

she had fallen off of her growth curve, and she had fallen below the first percentile. And this was as a result of a placenta that was no longer giving her the nutrition that she needed to grow. And at the time, I was an editor at Food & Wine magazine, and I had been... very excited about sharing cooking and food with her and sort of thought of it as something that I was sharing with her in the womb. And so the idea that I was this very, very well-fed food editor and my fetus was starving was an irony that was painful and not lost on me. So because of this, my daughter had to be delivered early in an emergency C-section. And she weighed one pound, 13 ounces, and she was resuscitated in the delivery room, which means that she was born not breathing and put on a ventilator. And she spent her first two months in the NICU.

Sarah DiGregorio

This story for me was very traumatic, but I wanna say from the very beginning, I was very aware of how lucky we were in terms in a lot of different ways. I was terrified the entire time that Mira was in the NICU, and for months afterward. But the ways that we were lucky kept compounding. I knew that we had made it to 28 weeks, which is a point where babies really do have a great, great chance of survival, upwards of 90% if all goes well. But feeling that gratitude, it was a very good thing to feel, but it didn't answer my questions about what had happened to us and more importantly what it all meant and what was happening to one in 10 families who do experience preterm birth. I felt like I had been dropped into a world that was sort of like a blank coloring book and I could tell that there was all this context around me but nothing was colored in. I didn't understand the context and so my reporting process was this very immensely satisfying and in some ways very healing

Sarah DiGregorio

because I got to go around and ask all my questions to the people who know the answers. And as a journalist, I felt empowered to do that. And one thing that came to me actually through also one of Dr. Lantos' books is this sense of the NICU as a liminal space, as this place where tiny humans are in the process of becoming themselves and it's a space where the curtain is pulled back on this very big mystery. You know, the making of a human life in a way that is sometimes horrifying and often hopeful and always awesome in the original sense. And so our NICU was an open ward, so that meant that I was sitting next to, it was just a room full of incubators. And so I sat there for 10 or 12 hours a day and there wasn't much for me to do except sit there and be with her. And so I could see all this stuff going on around me that I didn't understand.

Sarah DiGregorio

So one of the biggest questions this all left me with was, how have we arrived in this moment, where a baby like Mira, my daughter, can be born weighing less than two pounds and needing life support for every vital function, and yet she is a relatively routine patient in the context of today's high resource NICUs. And one question I had about that, it was about the extraordinariness of the ordinariness of this, because there are a lot of families have written or I should say several mothers have written memoirs about having a baby at the very margin of viability, meaning that that baby's survival is truly in doubt and it's not clear if the baby can be saved, unfortunately. For us, that was never really the question. For us, the question was that this extraordinary situation is something that has evolved to be something that neonatologists really can deal with. And so how has this progress happened, and what does this progress mean? And part of what I found was this sort of dance between ambivalence about premature babies, like,

Sarah DiGregorio

wow, and ambivalence about their treatment, meaning like, should we be doing this? Are they meant to be here? Versus this technological optimism which is kind of like, wow, look at what we can do now. And I think that asking these questions is important and is sort of a very, it's a very natural and human way to see premature babies. And so I'll tell you one story about what was essentially the first NICU in the United States. And this is the This is the boardwalk on Coney Island around the turn of the century, and that is essentially a sideshow. And it says, if you can see, it says, Infant Incubators with Living Infants. So the incubator was invented around 1880 in France.

Sarah DiGregorio

It's adoption, like the fact that we all have incubators now in hospitals. It seems obvious, right? It's like, well, these babies need to be kept warm. Here's this new machine that we can use to keep them warm. It keeps them alive. Let's use it. It wasn't quite that simple. I was surprised to find it was not that simple. There was always this sense of, well, this care is expensive. It turns out you need a lot of nurses to manage. incubator ward and also like more should we be doing this at all are these babies meant to be here around the turn of the century when incubation was taking off there was this there was eugenics as a political movement was becoming more powerful and so this sense of people calling premature babies weaklings and should we save the weaklings will they be sort of a a drain on our race. And here I always want to stop and say I am a proud weakling who has perpetuated her race, perpetuated her kind, I should say.

Sarah DiGregorio

That was the kind of thing that people who advocated for incubators were up against. And so this guy, Dr. Cooney, he called himself Dr. Cooney, brought incubators to the United States and he couldn't get the buy-in of any of the medical establishment, and so he built a clinic on the Coney Island boardwalk, and he charged admission, and he treated babies. People brought their babies to him. And he treated, over the course of 40 years, he treated 8,000 babies. About 6,500 of them survived.

Sarah DiGregorio

And the sort of incredible thing about this to me is how much it encapsulates the way that we do respond to premature babies, which is this kind of like, wow, but also a sense of like, oh, you know, a sort of a pity or a worry also, which I think is natural in the sense that, you know, you're seeing something that you shouldn't be seeing. At the same time, he had a treatment and it worked and he provided it. And I found that to be an incredible story. It's essentially the first American NICU. was a sideshow and I was able to talk to one woman who was successfully treated there and she said, you know, this is what was necessary for our care. We needed to have, the paying public was necessary for this and she was immensely grateful for it. So that was one kind of incredible story that I found and other people have written about that as well.

Sarah DiGregorio

There have been other iconoclasts sort of working throughout the middle of the 20th century to get us to where we are today. This is Maria Delavoria Papadopoulos, who I was lucky enough to meet in Philadelphia, where she is still working. She's in her 80s. She's an immigrant from Greece. She went to medical school in Athens, where she worked in a polio ward, and she told me that she had one blouse, one skirt, she ate one meal a day, and she injected herself with caffeine to stay awake. She was incredibly driven from the very beginning. And she immigrated to Canada, she started working at the hospital for sick children there, and at that time, in 1960,

Sarah DiGregorio

One of the biggest problems for premature babies is that their lungs are underdeveloped and so they have difficulty breathing. And so once incubation was established as a good treatment for babies, there was still no treatment for their breathing problems. And so this was something that people who cared for babies were always up against. Babies would die routinely from not, there was no respiratory support like we have now. So here's Maria DeLavoria Papadopoulos, Dr. DeLavoria, most people call her. And she saw these babies dying and she somehow could not accept that this was the status quo. I don't think anyone liked what was happening. Certainly people wanted to help their patients. But she could not accept that this was all that there was to offer. So at that time, ventilation for adults had just become common for surgical patients. And she said, well, why can't we use that for the babies? And they said, no, no, no, you can't do that. That's totally experimental. It's unproven. It's not going to work. And she was like, but why not? And they said, no, no, no, no, no, you can't do it. And she just kept pressing them. And you have to remember, this is a young woman doctor, an immigrant, and she could not take no for an answer. So finally, her colleagues said, OK, OK, we will let you intubate these babies. Intubate means to put a tube down the trachea to give babies breath by a machine.

Sarah DiGregorio

We'll let you do that if you wait for five minutes after we declare death. So she said, okay. So they would declare a baby dead. She would wait five minutes. She would intubate the baby. And in some cases... she could revive them. Unfortunately, those babies were too far gone at that point to actually survive, but she made the point to her colleagues that this was something possible, until finally they said, OK, the moment that we are about to declare death, then we can let you do this. And so she did that, and she did that, and she did that, and finally she had a survivor. And to me, there's several amazing things about this story. One of them is to imagine the physical nature of having to do this over and over again on children, knowing that you were probably not going to succeed this time and still not giving up. And for me, it helped me to rewrite the story of Mira's birth in my own mind, because when she was intubated at birth, The pictures of her after her birth were for a long time upsetting to me. I felt

Sarah DiGregorio

that that tube down her throat was a kind of a violation, even a violation that was meant to heal her, obviously. But now when I see that, I can see what was behind that. And what was behind that was this long, long line of babies who Maria worked on. the sort of the human story of that has made that a very different story for me. And I hope maybe for other parents who've had similar experiences who can find that out and sort of rewrite that for themselves. There are other, obviously, this is only one example of an iconoclast who really changed the kind of care we have for babies. And there are people working today who are, I think, also doing similar things who I read about a little bit in my book. I won't tell you about them right now, but truly amazing people who are doing all kinds of different work to improve outcomes for babies in different ways. And finally, I would just like to zoom out just a little bit to examine what prematurity can tell us from a public health point of view. So that's a really different kind of perspective.

Sarah DiGregorio

from a population level and how examining that, how we can use it as a lens to create a better and healthier society. When I first started researching the book, there was a woman at the March of Dimes who told me that the prematurity rate is like a canary in the coal mine. If those numbers are going up, then you know something is wrong. And those numbers are going up. They've been going up for the last four years. And there has been tremendous progress in saving the health and the lives of babies born early. And even healthy populations will have some rate of premature birth. But in terms of looking at that rate in terms of which communities are suffering from this the most, it can tell us, it can help us see, perhaps, ways that we can improve our society. So for instance, black women in America are 50% more likely to have a premature birth. And there's a lot of research now that points to that, specifically that disparity having to do with the experience of the stress of racial discrimination. And that can be in sort of all, in many different ways. So it could be something like being the only black female lawyer in your practice

Sarah DiGregorio

at work, because this risk cuts across income lines. Or it can be something like living in a neighborhood that was historically redlined. There was recently a study by Dr. Collins at Northwestern that looked at mortgage discrimination and the ways that that can correlate with premature birth. There are lots of different ways that we can look at this. That's just one way. There's also the case that difficult working conditions, like being on your feet for long periods of time, is correlated with premature birth. But we don't have a federal law that protects pregnant women. And even with a doctor's note,

Sarah DiGregorio

employers are under no obligation to give pregnant women lighter job duties. So there are lots of different ways I think that we can think about What premature birth is telling us about how we can be healthier, all of us as a society, you can look at it from lots of different angles. And I found that to be a really useful way to think about it as well. And finally, I just want to, before we have our conversation, I wanted to... The subtitle of my book is what it teaches us about, what premature birth teaches us about being human. So someone asked me the other day, what does it teach us about being human? And I had to think about that for a minute, which I should have been ready for that question. But what I found, I guess, is that not necessarily answers, but more and more and more questions, and deeper and richer and more complex questions than the ones I started with. But I would say that examining premature birth has revealed to me so much beauty, beauty that some people dedicate their lives to the children of others, that we will go so far for a single human life, that my daughter is alive because some people didn't give up. I found that it reveals grief, because grief for families, grief for providers, because not all the stories have a happy ending.

Sarah DiGregorio

And I felt that it revealed a lot of uncertainty and sort of the ways that we are all muddling through and trying to do our best for each other, even when we aren't sure what the right answer is. And so that's what I was left with in terms of what it taught me. And now I would love to have a conversation with Dr. Lantos about that, who is perhaps uniquely suited to have these conversations.

Dr. John Lantos

yeah i mean uh thanks that was great i mean the book is full of stories like uh the one about dr cooney and the one about uh maria delavoria papadopoulos who did her pioneering studies before there was uh you know the current research ethics oversight or irbs or all that kind of stuff i don't think she got informed consent from parents to intubate their dead babies but did pioneer positive pressure ventilation, which saved premature babies. There is an interesting angle to that story about weird nationalism. They were intubating and ventilating babies in Toronto in 1963 when the President of the United States' family had a premature baby. Just to put that in context, Patrick Kennedy Patrick. Anybody remember how many weeks gestation or how much Patrick weighed?

Sarah DiGregorio

Thirty-four.

Dr. John Lantos

Thirty-five weeks and two kilograms, which today probably would be, may not even go to a neonatal intensive care unit, but babies had respiratory distress and there was no intubation in the United States. Of course, we would not send a baby to Canada, so they went to Boston Children's where he was put in a hyperbaric oxygen chamber and gasped for two days until he died. So, you know, that's always a marker for me of sort of the amount of progress that 1963, even the president of the United States' baby couldn't be saved at 2 kilograms in 35 weeks. And today the borderline of viability is closer to 22 weeks of gestation and...

Dr. John Lantos

450 or 500 grams of babies less than a pound are now being treated successfully and surviving. One of the themes that's run through neonatology and neonatal intensive care from the beginning that you captured beautifully in this phrase is the dance between ambivalence and technological optimism. From the very beginning, There were some people who said, we ought to try to save these babies. And there were other people who said, why? It's too expensive. The survivors will have disabilities. They can always have another baby. Who needs this? And that continues to today. One of the stories in the book,

Dr. John Lantos

Sarah interviewed a doctor at the University of Iowa, Ed Bell, was the chief of their division of neonatology. And Iowa, for

Dr. John Lantos

mysterious reasons, became the center in the United States that started to push the envelope on the borderline of viability. So 10 years ago, most centers said, we'll try to save 24 weekers, but below that, we don't think it's worth it. None of them survive. And then some centers started doing 23 weekers. And in Iowa, they started doing 22-weekers. And they did it by creating a small baby unit within their NICU and using available technology. There was no technological breakthrough. But what changed was really the ethical climate of the institution, where they said, let's prepare for these babies, let's provide the treatment we can, and let's let the nurses and the respiratory therapists everybody else who really wants to do this work in this special tiny baby unit. And they started reporting 30 and 40, and now they're up to 60% survival for these babies born at 22 weeks of gestation. But most other centers would read that and go like, no, we're not going to do that. No, there's something different about Iowa. No, we don't think it's an appropriate thing to do. And that dynamic has been present throughout the modern history of neonatology.

Sarah DiGregorio

Do you think it's possible that the reason that Iowa has those results... I said this to someone the other day. I said it to an editor the other day. I said, I think that one of the reasons that Iowa has these results is really because everyone agrees that it's the right thing to do and so everyone moves forward in agreement as one with this sense that this is an appropriate thing to do. And they said, that's not possible. It's not possible that that's the reason why. And I said, well, I know it can't be the single factor, but I think it might be a defining factor of their success.

Dr. John Lantos

Yeah, it's really complicated. If you look around the world, I was the pioneer in the United States, but there's a center in Germany that does this. The Japanese have been doing it for a long time. In the last 10 years, the whole country of Sweden has lowered their cutoff for the gestational age at which they'll provide resuscitation. And I think it's two things. One, I think it's the institutional commitment, but then the institutional commitment leads to preparedness. And these babies are so fragile that if you're not ready, if you don't have a well-trained team in place when they're born, And if instead, as in most places, they say like, well, we were going to wait till they were 23 weeks or 24. Oops, they're born. Call the team. What are we going to do? And the team doesn't function smoothly and things go badly. And then they say, see, we knew it wouldn't work. That's why we didn't resuscitate at 22 weeks. So it's a combination of having the protocols in place and then training the team to use the protocols. in a smooth and efficient way, sort of like CPR or trauma teams or anything else where it's a complex team that has to work together in emergency situations where there's no time to think and deliberate, you just have to...

Sarah DiGregorio

One of the... Dr. Daigle at Iowa said to me, I was surprised that he was willing to say this, but he said, the equivalent of this is if there was a car accident, and they called 911 and they said, oh, there's a 12-year-old, he's hurt pretty bad, oh, just leave him there. I mean, that's really how he thinks of it.

Dr. John Lantos

Or sit down with the family and say, well, you should know that if he survives, he has a 20% chance of brain damage and he might never walk again. What do you want us to do? That's probably closer to what happens in NICUs. It is a process of shared decision-making, though. and for babies born at the borderline of viability, doctors will sit down with the parents and go through this dance between ambivalence and optimism. And some people choose comfort care and some people choose intensive care.

Dr. John Lantos

However the gray zone is defined, there's a zone in which parents have the discretion to refuse life-sustaining

Sarah DiGregorio

treatment. Will you tell us a little bit about the first time you were in the NICU? Because it was one of the only things that really spoke to me. I almost feel like, well, why don't you tell us and then we could... It's the first thing in my book. It's excerpted from Dr. Lantos' book.

Dr. John Lantos

It's a little bit of an embarrassing story, but...

Dr. John Lantos

The point of it is NICUs are really strange places. The first time I was in a NICU was when I was a fourth-year medical student. In most NICUs, they don't even let the medical students in because there's nothing they can do. I mean, the care is so specialized that it's not a good place to learn. Medical students should go where more routine things are happening. But they allow people to do what they call sub-internships, and I went to make rounds in the NICU. and was absolutely emotionally overwhelmed by the contrast between these tiny babies who, like you think you can imagine how tiny they are, but when you go in there and you see them, these are babies who fit in the palm of your hand, and they're sitting in these pods that look like you know, the cockpit of the space shuttle. I mean, they're hooked up to 12 different monitors and six different drips, and they have lines coming out of everywhere. So this tiny baby is like the hub of a massive amount of technology. And when I first went in there, it sort of took my breath away. And the contrast between that and the doctors

Dr. John Lantos

who were going around on rounds, going like, oh yeah, this is a 500-gram 24-weeker. We got an ultrasound, had an IVH, we're given TPN, next baby. And I was sitting at the back of these rounds, and I started getting dizzy. And my palms started to get sweaty.

Dr. John Lantos

Luckily, I stepped out before I... fell on the floor, but had to leave the NICU and go sit in the waiting room with my head between my knees. And I think, I mean, when that happened,

Dr. John Lantos

I thought, man, what a sign of weakness. I may not have the right stuff to be a doctor. Although, as I got older, I saw it more as kind of a sign of sensitivity to the bizarre weirdness of this activity that almost challenges consciousness to imagine what's going on in there. You describe your first impressions. A lot of parents say the same

Sarah DiGregorio

thing. It strikes me that that reaction is something that qualifies you to be a physician.

Sarah DiGregorio

When I first saw Mira, I really, it really, I tried, I really reached for the words to explain what that is like and the only thing I could think of was like, it's like if you haven't seen an airplane ever in your life and you've never even heard of what one is, like that sort of like the disorientation of scale and technology, which is, really kind of shifts the ground under your feet in a way. And then to have it be as though you had never seen an airplane but then also suddenly you had given birth and somehow your child was dependent upon the airplane for survival. I'm not sure if I can even describe it accurately.

Dr. John Lantos

You talk a little bit in the book about sort of making friends with the technology. which was an experience I had too from the other side as a doctor, that after a while it starts to seem like the technology is your

Sarah DiGregorio

ally,

Dr. John Lantos

and

Sarah DiGregorio

then

Dr. John Lantos

your

Sarah DiGregorio

friend. I felt that way about her incubator in particular, that at first I felt that it was keeping her from me, but by the end of the experience I felt that the incubator was my friend, was protecting me. And it's funny because you can tell as a parent that you're... almost that you're literal, what you are seeing is different from what the professionals are seeing. When you see it, you look around and you think, well, they cannot be seeing this because everyone is walking around, like you say, acting like this is totally normal. But it is its own world, and the longer you are there, the more you can see something as a friend or as an ally, or you understand a little bit more it was one thing that struck me about the history of this was you know how did someone think oh this back in the 1800s the incubator it works it's expensive i'd like to use it huh i think i will create a show in which i invite the public in to to look at the babies and that will finance the care. And that really was a model that worked for decades.

Dr. John Lantos

The way politics are going, we may get back to that.

Sarah DiGregorio

That's right. What we have is maybe marginally less absurd. Probably

Dr. John Lantos

charge more than a quarter.

Sarah DiGregorio

But there is this sense that that juxtaposition of the most fragile human beings who exist with the most advanced technology that we have, seeing them together like that is something incredible and worth paying for, perhaps. A

Dr. John Lantos

little bit of history. When people first started talking about saving babies, babies were not covered by health insurance. Babies were billed as part of the obstetric billing, and well babies still are. It's part of the charge for having a baby. They go to the well-baby nursery and they get weighed and measured. When people first started saying, no, we should have a special unit and we're going to have one-on-one nursing and we're going to have ventilators and we're going to draw blood and we're going to do all this stuff. I was like, who's going to pay for that? It's collectively subsidized.

Sarah DiGregorio

That was in one of those American Academy of Pediatrics interviews with Dr. Lewis Gluck, where this was an oral history, which was something that I leaned on in the reporting of this book. There are some really good oral histories if people are interested on the American Academy of Pediatrics website. And he said, this doctor who had seen this evolution, he said the thing that really made NICUs proliferate was, and this is in his recollection, in 1971 there was a bill that said insurance needs to pay for the babies even if they die. So previously, a hospital, when insurance came about, the hospital would be reimbursed for the care of the baby if the baby survived for 15 days. And if the baby didn't survive for 15 days, then the hospital would be out that money. And Dr. Gluck in this oral history said the real big advance was the minute that insurance was going to have to start to pay for babies, whether they lived or died, then everyone wanted a NICU.

Dr. John Lantos

Should we take some questions or comments from the audience? I think there's a mic, or you can stand up and shout it out.

Audience member 3

What are some of the costs that you've, for a NICU, like you with your premature, and also what are some of the issues in terms of health?

Sarah DiGregorio

You mean long term? After the NICU? Yeah. Yeah. That's a great question, and we haven't touched on that. It's very real. Prematurity doesn't end at discharge. So just speaking personally for me, for my family, we have been very lucky. My daughter has an ongoing minor motor, we call it a delay. I'm not really sure why we call it a delay because it's not clear to me that it's going to resolve, but it's minor.

Sarah DiGregorio

She's been getting early intervention basically since she came home from the NICU. Again, very lucky position for us to be in. She gets a physical therapy, occupational therapy. And that has enabled her to find the ways that her body is strong and getting stronger. It enables her to feel like she knows how to keep up with her peers. And again, because we are lucky, she does keep up with her peers. And she gets those services in school. And she has asthma. She has fairly significant asthma, which we just this winter, knock on wood, have gotten basically under control, have not had any hospital visits this year. And so, yes, like that's from my perspective, those have been the things that have followed us. People have wide range of experiences. Some people come home from the NICU and luckily their babies do great and they don't have any ongoing needs and other people's families have a much harder road to walk and they can have, you know, much more severe disabilities. It's a very, very wide range of experiences. Dr. Lantos might be able to speak more to that.

Dr. John Lantos

I mean, the biggest categories of disabilities, and they all are more common, the more prematurely the baby's born. So babies born at 23 or 24 weeks are more likely than babies at 28, more likely than babies at 32.

Dr. John Lantos

There are neurodevelopmental problems, which can range from severe devastating brain damage to mild cerebral palsy or mild problems with balance or running or something like that. So neurodevelopmental stuff. Eye problems. So babies' eyes are uniquely sensitive to oxygen, but they need oxygen to survive. So there's that. really delicate balance between giving them enough oxygen to live and enough oxygen to prevent the neurodevelopmental problems, but not giving too much that it will cause a disease called retinopathy of prematurity, which can cause severe visual impairment or, in the worst cases, even blindness. Third category is chronic lung disease. Whether Mira has asthma because she was a preemie or I mean, people who are not preemies obviously get asthma as well. It's hard to know, but premature babies require mechanical ventilation. Mechanical ventilation causes damage to the lungs. If you're on a ventilator for a long time, you can end up with a chronic lung disease that's almost like emphysema. And then there's a bunch of other more minor or rarer problems that are associated with prematurity? Cost.

Sarah DiGregorio

Oh, you mean the cost, yeah. Well,

Sarah DiGregorio

in the United States, I think the best estimate we have is that prematurity costs us $26 billion a year. It's hard to estimate

Dr. John Lantos

because...

Sarah DiGregorio

You said that

Dr. John Lantos

so quietly. Billion with a B.

Sarah DiGregorio

Billion with a B, yes. It's hard to estimate because it would encompass medical care for the baby, also loss of productivity for the parents when their baby is hospitalized, potentially loss of productivity for a child who grows up with complex medical needs and how that impacts their adult life. But my understanding is that the best estimate we have is $26 billion a year in the United States. And in terms of how ongoing care is actually borne by individual families, You know, if you are lucky to live in a state that has a high quality early intervention program that's accessible to you, that you qualify for, it can be either free or very low cost.

Sarah DiGregorio

That's for the developmental care that follows from premature birth. In terms of the medical needs, it's like everything else in this country where it's sort of catch-as-catch-can. Maybe you are lucky enough to have good insurance through your employer. Maybe you have Medicaid. But the costs can be tremendous even if you have good insurance. I mean, we...

Sarah DiGregorio

We're very lucky to have very good health insurance, but we have an out-of-pocket maximum per year. But my daughter was born in November and stayed in the hospital until January, the end of January. And so we got to pay our out-of-pocket maximum two times for each year. And, you know, that can be very, very difficult for families. It's very much dependent. But, yeah, it's tremendously expensive.

Dr. John Lantos

For the most expensive babies, so babies who are born at 23 or 24 weeks, and who survive, so they will be in the NICU for three, sometimes four months. The hospital bill can be well over a million dollars. Here's an interesting fact, though, about cost. People talk about absolute cost, like a million dollars or 26 billion, but if you look at cost effectiveness, which is usually measured as dollars per life year that you get for those dollars spent, or some people even do what they call quality-adjusted life years, NICU care, regardless of birth weight, turns out to be remarkably cost-effective. And here's why. Most of the babies who die, die pretty quickly. And so the ones who don't die, even if it costs a million dollars, survive. Most of them do pretty well, and then they live for 80 years. So if you amortize that million dollars over 80 years, Turns out the dollars per year is much lower than if any of you end up in the ICU on a ventilator.

Dr. John Lantos

And the reason for that is because if you're in the ICU, you won't die slowly. The longer you're in the ICU, the more likely you are to die. The longer a baby's in the ICU, the more likely you are to live. So the dollars per quality adjusted life year for adult ICUs is about six or eight times what it is for NICUs. So from a societal perspective, if we wanted to allocate dollars quickly, we'd say no intensive care for any of us in this room. Treat all those babies.

Dr. John Lantos

Yeah.

Audience member 4

When the parents have come in and they know the baby is going to be born, I assume the discussions are going to take place before the birth?

Dr. John Lantos

Ideally. Sometimes it's a precipitous delivery.

Audience member 4

I would think if the baby ends up born, as in breathing, you have to intubate. Is that the word you used?

Dr. John Lantos

Yeah.

Audience member 4

Right away?

Dr. John Lantos

If you've chosen life-sustaining treatment. Okay.

Audience member 4

Within the gray

Dr. John Lantos

zone?

Audience member 4

Or you mean... Well, I'm thinking of the length of time.

Dr. John Lantos

For making a decision.

Audience member 4

For making a decision.

Dr. John Lantos

You don't want to wait till the baby's born.

Audience member 4

Right.

Dr. John Lantos

It's blue and gasping and mom is lying on the delivery room table and you, that's not a good time to have a discussion. Correct. Here's the problem with the prenatal discussion. So two problems. One is you often don't know when exactly the baby's going to be born and so If women are in labor and delivery, in premature labor, there's drugs you can give to slow the labor. And so they might be at 23 weeks, and you have a discussion about what babies are like at 23 weeks, but then they don't deliver at 23 weeks. And so then you have to go back and have another discussion because the outcomes for 24-weekers are different from the outcomes for 23-weekers. And so the situation is... always changing in ways that make last week's discussion, when it was done at the right time, because people weren't in labor, the baby wasn't born, irrelevant if it's a week later. So it's a moving target that's tricky to hit exactly

Sarah DiGregorio

right. And it's true that some families unfortunately don't have even the benefit of a couple hours, right?

Dr. John Lantos

Right, because some people come in. imminently delivering. I mean in most cases what doctors will do is err on the side of life in those. Try to save the baby and then have a discussion because it's legal and ethical to withdraw life support in situations where it would be legal and ethical not to start life support. You can have that discussion later. I don't know who was first. Go ahead.

Audience member 2

Thank you for the discussion. It's interesting. One question, if you have no insurance, what are your choices? And also, what do we know about the pain that a 22-week-old might experience with all these tubes and whatnot?

Sarah DiGregorio

Insurance-wise, My understanding is that all babies are covered under Medicare. So women... Medicaid? I'm sorry, Medicaid. Definitely not Medicare. Women in various states are offered Medicaid when they are pregnant at a higher income level than when they are not pregnant so that they can get, hopefully, access to prenatal care. after they give birth they, in many states, no longer will qualify, but the baby will continue to qualify. So the hope is that no, my understanding is that no baby would be uninsured in that sense. And maybe Dr. Lantos can speak to the pain

Dr. John Lantos

issue. No, that's exactly right. Is that right? And it's interesting how that came about politically too. It was an alliance between some strange bedfellows the right to life movement on the one hand saying we can't get rid of abortion, we're just going to make sure that every baby who's live born is going to get medical care and disability rights advocates who said you can't not treat a baby based on anticipated disability so they came sort of from the left and the right to convince state legislatures that You've got to pay for this. And my experience in three or four different children's hospitals is nobody even asks the question of insurance status when there's a premature baby born and hospitals, for the most part, get paid. I mean, the bigger problem today would be undocumented immigrants who don't qualify for Medicaid. But that's... That would be a whole separate discussion. On pain, it's not just the tiny babies who experience a lot of pain. I'm sure you watched a lot of painful procedures. Sick babies require, when they're sickest, six, eight, or ten invasive procedures a day, including intubation and starting IV lines.

Dr. John Lantos

Doctors try really hard to treat that pain, both specific procedure-related pain, but also if the baby's on a ventilator, giving narcotics or sedation, as we would for an adult. But you can't make the pain go away.

Sarah DiGregorio

I found it interesting to the way that pain is thought of in the NICU because obviously there are some things that are quite clearly painful procedures. for which they get pain medication as needed. But when you think about a baby whose skin is not fully developed, discomfort is a big problem in NICUs and sort of the ways that clinicians have come up with to minimize discomfort. So things like, I remember when Mira, several times, they have them, They give a sucrose. They have them suck on something sweet while they're going to do something unpleasant to them. And apparently it decreases their stress response, as it was good for all of us, really. But that was not something I had ever seen or heard of. You're going to give her something sweet to suck on. It's like a... It works. Yeah. So that was very

Dr. John Lantos

interesting. As best you can assess pain. I mean, pain in a newborn is always going to be assessed by somebody watching them. If you give them a drop of sucrose, they don't cry as much and they don't grimace as much.

Sarah DiGregorio

Are their vital signs stay more stable? That's one way it

Dr. John Lantos

was

Sarah DiGregorio

described to me. It's like

Dr. John Lantos

chocolate in Harry Potter when the Dementors came. It sort

Sarah DiGregorio

of

Dr. John Lantos

makes you feel better.

Sarah DiGregorio

Yeah, it makes you feel better. And the other thing is parents' touch. Sorry, but that was emphasized to me as well, that if a parent can... can use containing hands on a very small baby while something is happening with that can also decrease their stress response, keep their vitals more stable, and decrease their pain.

Dr. John Lantos

Last one,

Audience member 1

I think. You just kind of touched on something. I wanted to go to another angle. I was one of the people who started Lamaze Childbirth Education in Kansas City in 1972. And in 69, I had a

Dr. John Lantos

child who was premature

Audience member 1

only two weeks

Audience member 1

and four pounds, four ounces. At that time, so I was a strong advocate for parental involvement in the whole pregnancy and the birthing thing. And at that time, they were assessing, my daughter could breathe, and she had no issues with breathing or anything, was her weight made her be premature. And they wouldn't let me touch her for,

Audience member 1

Well, they would let me touch her, but I couldn't. For five days, she went without much human touch. And I believe today, still, they're advocated for people to be able to touch. And you just mentioned it. So I'm curious as to how prematurity is diagnosed these days, because I'm way out of touch with that, and the ways that the child does have that element of touch that does make such a difference.

Sarah DiGregorio

I'm sorry, that was your experience. It's very hard to have your child be, to not have that sense of being able to hold your baby.

Audience member 1

This child is college graduate, everything. She didn't have any issues, but I can tell that there may be some minimal attachment things going on. And those are a way that I believe we have a hard time assessing the cost of long-term. Sure. I'm sure that that's true. So anyway, just whatever you would want to say about that. Thank you. I

Dr. John Lantos

mean, I think people are working harder to

Dr. John Lantos

encourage parents and nurses to touch hold of this thing called kangaroo care, where actually hold the baby skin to skin. When babies are too tiny or too sick, you can't do it. I mean, they're just too fragile.

Sarah DiGregorio

My understanding is that one, assuming that a baby is stable enough to do kangaroo care, and I think that that assessment can differ from NICU to NICU. I know some NICUs will allow you to do kangaroo care if your baby's intubated and some won't. At least that was my experience in 2014.

Sarah DiGregorio

I know there's a lot of research that says that the more skin to skin and the more parental involvement, the better for a baby's outcome. I think that makes intuitive sense to a lot of people and is borne out in the research. But again, it is this balance about what saves their lives.

Sarah DiGregorio

what saves their lives is often not good for them. And yet, so finding the ways to deliver those interventions in the ways that are most gentle and most neuroprotective and most like the womb, that's sort of what seemed to me to be the goal of many clinicians that I talked to. I could tell you a lot of that. There's a woman named Dr. Heidelise Als, who if I start talking about her, I won't stop. So I won't say much about her right now. But she basically really revolutionized NICU care. She's still working. She's in her 90s. She's at Boston Children's. She came up with this thing called newborn individualized developmental care. And it was basically all about recreating the conditions of the womb in the NICU, trying as much as possible. So it's low light, less stimulation, more access to the sound of the parent's voice, the smell of the parent's skin, all of those things. And her work is pretty incredible to learn more about. In terms of how prematurity is diagnosed,

Sarah DiGregorio

you know, premature birth is 37 weeks, 37 weeks gestation and fewer. Some babies are small for their gestation and gestational age is not always, and Dr. Lantos can speak more to this, but gestational age is not always precisely known. It has a, you know, it is either dependent on you remembering the first day of your last period or having a very early dating ultrasound. But even with those, even in all those with all those factors met, you often don't really know for sure down to the day. And so, you know, maybe you want to speak more to

Dr. John Lantos

that?

Sarah DiGregorio

That's, you know, sometimes babies

Dr. John Lantos

are... In a week. And it's defined as 37 weeks of gestation.

Dr. John Lantos

Our dating is 37 plus or minus a week. Some babies come out looking more mature than we expect and some come out

Carrie Coogan

less mature.