23 Weeks 6 Days

Hey, this is Radio Lab, I'm Pat Walters, one of the editors here, and this episode we're about to play is, well, it started as a newspaper story that a friend of mine and actually one of my first editors in journalism wrote way back in 2012 for the Tampa Bay Times. And when I read it, it just destroyed me. And I sent it to Chad and I was like, you got to interview Kelly about this story. And he did and the episode it became is still one of my favorite episodes of the show ever. And when we started talking about playing it again, I wondered how's everybody doing now all these years later. So I checked in. I really didn't know what to expect. And what we found was very moving. That's at the end. I hope you'll stick around and listen to it. The first, here's the original episode, 23 weeks, six days. I was listening to Radio Lab, from WNYC. So we're just doing this because, because that article you wrote was so beautiful, one of the most amazing things that we've ever read. Oh, thank you. Okay, I'm Chad Abumran. I'm Robert Kroich. This is Radio Lab and today, a story about a decision. About a decision that we, as human beings, we've only recently begun to consider. Yeah. Sure, there are stories like this elsewhere, but somehow not too many. Yeah, maybe not. So we're going to devote the entire hour to just this one story, which I think is a first for us. I think it is. And the story comes to us from a woman named Kelly Benham. She's a reporter for the Tampa Bay Times in Florida. I think the way to do this is chronologically just sort of across time. Where were you and who, what did you want to do when I decided to have a baby? Yeah. Were you one of those people who, ever since you were young, you knew that you would be a mom? Yeah, I did. But I wasn't like, I didn't play with a lot of dolls or babysit, but I always just kind of had this weird certainty that I'd have a daughter. I'm a daughter and not a son. Maybe a son, too. But I don't know. I think I always thought I would have a daughter. And I sort of had this image of her in my head. And what was the image? Like really feisty, mischievous, dark hair, dirty face. Okay. We've left Princess Land now. Not a princess at all. A tree climber and a dog chaser. I really wanted to have a baby. I wanted one very badly. But I just couldn't see how it made sense for me to be the father. This Tom French, also a journalist at the Tampa Bay Times, or he was at the time, and Kelly had been dating for a few years, but he was a good 10 years older than her. I had two kids, sons, approaching the end of college. And I was ready to travel. I wanted to see Spain and Greece. The World Tour on the cruise ship where you get to be the poker master or whatever you would see. The only World Tour I would have been in was Springsteen. Springsteen. Following Springsteen around Europe. I'd made up my mind. No more kids. He was insistent. I stuck to it. She saw our daughter very clearly and saw that I was destined to be that little girl's father. And was that a happy, gentle disagreement or the other kind? I was brutal. We broke up and we worked at the same place. There was kind of an invisible line in the newsroom that neither of us would cross. The line was the mailboxes. There really was a line. Wow. It was a horrible time. We call it the dark era. The dark period. It was the Halloween section of Target. My sons and I have loved Halloween forever. I love it when I was a little kid and I just wanted to see what they had if they had anything new because I had, you know, I usually check out their gargoyles and stuff. So I just was kind of walking through the section, browsing. And then something just stopped me in my tracks. Apparently it was really kind of a lightning bolt epiphany. And I just, so wait a minute, maybe you are not thinking about this straight. Your acting is though you're 80. And then it hit me that nobody knows how much time they have to have a child is to embrace a future that you can't control. Remember those words. So I had this come to Jesus meeting with myself among the gargoyles. And that was when I realized I needed to just take a step back and try to restart the conversation with Kelly. And so then he, you know, went home and wrote me this long letter and I just, I was over him by that point. I was like, I wasn't looking back. So, you know, over a few months. Took a little while. They patched things up, eventually got married and started trying to make a baby. We thought that this would just happen right away. And then of course it didn't. After trying and trying. The regular way. She took. Drugs that make you drop a bunch of eggs at one time. After that? The turkey baster method. There's like kind of a process that they walk you through. After turkey baster. IVF. Test tube stuff. Yeah. And I never thought that it would get that far. But it would go farther because after trying IVF. Three times. That didn't work. And you can try it with an egg donor. Meaning you get a friend who'd be willing to donate the egg, take the egg, put it in the dish, forcefully, and pregnant with Tom Sperm, then you insert the egg into your womb. And that's kind of the magic bullet, it seems, in fertility. It's kind of like, if you don't know what's wrong with your car, you just replace the whole engine. Kelly asked a good friend to be an egg donor. They even planted the egg. And shortly after she took a pregnancy test. I tested it away too early and so the line was super, super faint. Wasn't even sure I could see it at all. So I took a photograph of the pregnancy test and I put it into Photoshop. And I actually had to dial up the contrast to make the line up here. That is everything about this is so high tech. Right? Wow. And did you see what you wanted to see? Yeah. And I was like, oh my god, I think there's two lines there. So I waited and I did it a second time and then I told Tom. And did you go into the expectant parent mode? Oh, yeah. You touched up the paint. You know, I patched the little holes in the wall. Everything was perfect. Everything was absolutely perfect until it wasn't. Five months into her pregnancy, 20 weeks, which is just about halfway, because the full term is 40, Kelly was at a park playing with her dog. And I just, I felt a little bit weird and just started to bleed. Like not a lot, but any amount of blood is not a good thing. And I called the doctor office and they didn't seem too concerned. They were like, yeah, you probably want to go to the hospital and get that checked. And I went to pick her up and by the time we got to the hospital, she was in a lot of pain, cramping, cramping, cramping. I knew something was really, really wrong. They got me into one of those wheelchairs and they wheeled me into the sort of triage room. And by that point, like blood was just coming out of me, chunks of blood coming out of me. And I didn't know. I thought it was baby parts, like falling out. And I thought I'm having a miscarriage, like the baby's going to drop out on the floor. I was throwing up. And then the doctor came in and he looked scared. Does the doctor say something or what happens? The doctor explained to me quietly there was something that was making it difficult to stop Kelly's bleeding. And if they couldn't stop, we might lose Kelly. And Kelly heard the doctor say this and I need to tell you, Kelly is the toughest, most fearless person I've ever known. She grabbed my arm as hard as anyone's ever grabbed my arm. And I remember just asking him, don't let me die. Please don't let me die. It was terrifying. And then at some point, they brought in an ultrasound machine to see what was going on with the baby. And I assumed the baby was long dead. I mean, I thought there were baby parts on the floor, I didn't know. And they hooked up this machine and they were moving around and around and trying to pick up heartbeat and there was nothing. And I was apologizing to Tom. I'm sorry. I just knew the baby was gone. Then all of a sudden, there it was just this heartbeat. This is sound she recorded on her cell phone. Baby's heart's beating super, super fast, so it's sounding like a rabbit or something. You just hear it on the son of a ground? Yeah, this heartbeat pops up and then there's the baby and you can see it and she looks fine. She's totally oblivious. She's just right there. So now I thought, oh my god, I'm going to watch her die. I'm going to watch her die in front of me and then they started just pulling. me full of drugs to try to get this labor stopped. There's this drug called magnesium sulfate and one of the effects of it is it just makes you kind of boil from the inside. But eventually they got the contraction stop, they got the bleeding stop, they put me in a hospital room and they said get to 24 weeks because that's the limit. So four more weeks? Yeah, it was almost like they don't line in the sand, like you must get to 24 or there's no hope. And why 24? What's special about that number? They told me that 24 weeks is kind of the loose definition of viability. That sort of grew out of when they were fighting out Roe v Wade. In Fondrene, Birk, the state, for example, the court ruled that a woman who commits an abortion on her self is guilty of no crime again. Okay, so here's the story as I understand it, Robert. Okay. In Roe v Wade, the Supreme Court was trying to strike this balance. They wanted to protect the woman's rights to choose as we know, but they also wanted to say that there are limits to that right. That there is some moment in the development of the fetus and the course of this pregnancy where you cross this line and suddenly it's no longer just about the woman's rights. Now you have to think about the state's interest in the unborn child. The problem, of course, is where do you draw that line? Now that is the million-dollar question. This is Nita Farahani. She's a law professor at Duke University. So the kind of best guess at that point, the best medical objective standard that the justices could come up with? And this is in 1973? Was viability. And the word viable in this case means can it survive on its own? Yes, outside of the woman's womb. In other words, when a fetus is developed enough that you can take it out of the mother's womb and it can still survive, that, the court suggested, is the point when it is no longer okay to have an abortion. Because across that line, a fetus is quote viable. So then the question was when does a fetus cross that line? When can it survive on its own? Well, we began the suggested in our brief with the development of the human embryo. And here's where you get to the 24-week thing. What ended up happening was that the court considered what was known about fetal development. And there are charts that show this. You go like this. Three weeks. The fetus's brain and heart begin to develop. Eight weeks, nerve fibers. 13 to 16 weeks, the fetus begins to move and then kick. At 23 weeks, some fetuses respond to familiar sounds like a mother's voice. And at 24 weeks, air sacs form in the lungs. And the thinking was maybe that's the point, the minimum point, where the fetus is viable, because perhaps it could breathe on its own. But this was just a theoretical idea. No one was testing it. No one was trying to take the fetus out of a mother at 24 weeks to see if it would survive. In fact, throughout the 70s and 80s, most hospitals, according to Kelly, drew the line of viability back a little bit farther, at 28 weeks. And that is because somewhere around the 28th week of gestation, the lungs start to produce a fluid called surfactant, which prevents the lungs from collapsing and sticking together between breaths. So that's a really important thing. So for a long time, the actual viability line, not the theoretical one, was 28 weeks. But then in the late 70s, someone invented an artificial lung surfactant. It's kind of a slippery white stuff that they shoot down the ventilator tube and the baby's born. And that combined with IV nutrition, new super small ventilators, moved the line of viability back to around where it is now. Where it is now is generally around 24, but here's the thing, depending on what hospital you're in, even what doctor is on call, sometimes it can be 23 or 25 or in some cases, 22. So given modern technology, you could imagine, says, need a one day the line could jump way back, which will make things really tricky. If, for example, we get to the point where modern scientists are able to develop an artificial womb, does viability start at the point of a fertilized egg? You know, if the standard is the point at which the developing child can actually survive outside of the womb using any technological intervention possible, that is a slippery line indeed. They said get to 24 weeks, because that's the limit, which meant that the doctors have the pump kelly full of drugs, keep her feet elevated for at least another four weeks. But I just kept going into labor in and out of it and they felt like they couldn't hold it off anymore. And at 23 weeks and four days, a doctor tells her that there's nothing more they can do, the baby is going to come in a day, maybe two. The guy comes in and he seems a little uncomfortable, like this, it was not pleasant for him. He said, you know, your baby's probably coming in 24 to 48 hours and we know how hard you work to have this baby and we know how much you want this baby and we assume that you want everything done. What does that mean? We had no idea. So we said, we're not sure if we do want everything done. Paint the picture for us, doctor. And he said, you know, there's about a 53% chance that the baby will die no matter what we do. 53? Yeah. Whatever we do. Whatever we do. There was a small chance that she could be fine. What were those chances? About 20. I felt like 20%. You know, it's not an impossibility. It seems like a, like a reasonable, it seems like worth a gamble until you really think about what the 80% means. I mean, she could be on a ventilator for the rest of her life. She could have a massive bleed in her brain and it was like heat holes in her brain and affect her ability to think or talk or walk. She could, pretty good chance she could be blind or deaf and there was no way for the doctors to predict. But what the doctors did know is that when the baby came into the world, it would need a ton of medical support. It may even need to be revived. And so the question for the, for Tom and Kelly was, do they want the doctors to do that? Do they want them to pursue every measure possible or no and just let nature take its course? And he said it would be, we should decide before the baby came because once the baby came, if we saw the baby, it would be really hard to say no. So if, if no was going to be the answer, we need to just say that before the baby came. That's the worst night ever. You're trying to make up your mind about what's what's right. Like would we be torturing this baby for nothing? We didn't want her to be born and have a life that she would hate us for having. There have been instances where children with birth defects or genetic diseases have filed wrongful life suits, essentially claiming that they should have never been born. We had to really debate what was in her best interest. What would she want? I started to really struggle with whether I was being selfish, whether I had already pushed too far. And this was like God or the universe pushing back. That we would end up losing our house, our marriage might break up. We would lose our ability to try again for another child. I felt like I might get a baby, but I would lose everything else. And I think I got pretty close to know. All night as we're talking this through and crying and trying to figure it out. We could hear the baby's heartbeat through the monitor. Baby was letting us know. All night, I'm right here. I'm right here. But there must have been a moment where you had to say yes or no, out loud. Well, we asked for second opinion or not a second opinion, but another consult. We had some more questions and a nurse practitioner from the NICU came to the room. Yes, my name is Diane Loiselle. I'm a neonatal nurse practitioner. This is the next day. They had asked to speak to someone again. And instead of just citing numbers and statistics. I don't give numbers. It's different for each baby. She kind of started to paint a picture. This is what I've seen. I've been doing this 30 years. But more importantly, I also told them that it wasn't a yes or no decision. She said, you know, you don't have to decide right now. They could have the baby. If the baby came out crying and active, then we should do everything we can for the baby. But if the baby came out blue and limp, intraventricular hemorrhage, we could stop. We didn't have to keep going. If something goes horribly wrong, we can withdraw the support. And then you can hold your baby until it dies. But you can give your baby a chance and see how it goes. In other words, in a very real way, they could give this decision to the baby. That same night, I was feeling like just uncomfortable. A couple hours later, discomfort turns the pain. Finally a doctor came in and was like, yeah, here in labor, we have to go right now. So then it was like super, super quick. Oh, our light shot in the spine, cutting me open. And then, oh my god, there's a third person in this room. But not really. Not quite almost. I mean, she was so, so early. And why did she look like? Well, I didn't see her then. I just saw like her kind of whizzed by in an incubator. And she just looked like a little dark smear in a hat. And did you make it to 24 weeks? So we were one day shy of 24. 23 weeks and six days. We'll be back in just a moment. Hey, I'm Chad Abumrod. I'm Robert Krollwich. This is Radio Lab. Today, we're spending the entire hour on a single story, which we saw in the Tampa Bay Times, Kelly Benham, a journalist, published an unbelievably wonderful set of articles about her and her husband, Tom French, who is also a journalist. They had a baby, except their baby came very, very early. So full-term, as we've mentioned, is 40 weeks. Their daughter arrived 23 weeks and six days, which works out to be just a little bit over halfway. Now, just to put that in context, if a baby is born before 22 weeks, it's generally considered a miscarriage. And pretty much no doctor is going to intervene. If a baby is born after 25 weeks, there've been all kinds of studies which show that doctors then feel morally obliged to save that life, no matter what the parents say. So, before 22, and after 25, things are pretty clear. But between 22 and 25, you land in this grey zone, this strange little liminal space between life and death, where you have to answer some really tough questions. Like, should my baby live at what cost? And who gets to decide? And ultimately, when does life begin? Kelly and Tom, like many parents who land in this zone, decided that for the hardest question, ultimately, it's up to the baby. The baby will tell them whether it's going to stay or whether it's going to go. So they delivered by a C-section, and their daughter, with that point, didn't have a name, was whisked off to the neonatal intensive care unit or the NICU, and eventually they went to see her. And they gave it her. For the first time. And she was, like, weirdly perfect. She had all the parts, these long fingers and long feet delicate little nose, and she had hair and fingernails and eyebrows, and all the things that they're supposed to have. Because she was translucent. You could just see right through her, you could see all the veins running under her skin, you could see her heart thumping in her chest. And her eyes were sealed shut, like a puppy. And she was like beat up, like she had bruises all over her body, and she had a black eye. Just from the, you know, they were very careful with them when they're born, but just that very delicate handling, kind of batters these babies because they're so fragile. I mean, it was like weird, like I didn't know how I was supposed to feel. I mean, you want to believe that the minute you meet your daughter, there's going to be like butterflies, you know, or like unicorns, or supposed to be the best moment in your life. But there was so much terror inside that moment. I was terrified because I love being a father. My relationship with my sons is extremely important to me. And I was really terrified that she would be so alien having been born at 23 weeks, six days, that I wouldn't recognize her as my daughter and that I wouldn't bond with her. That thought was filled me with a real dread. And I went up to see her. I could see that she was only half finished, barely a pound at that point. So tiny my brain couldn't even process how small she was. And the nurse, Gwen, she said, "Well, you can touch her, you know." And I was stunned because I didn't think I would be able to. So she had me, I'd already washed and sterilized my hands once and she had me do it again. She showed me how to reach in through this little round portal into the incubator. And explained how to touch her. You don't rub the skin because the skin will come off if you do that when they're born that early. You just press gently. And so the baby was lying there, not with her fists, but with her arms extended, with her palms open. So her right palm was right there when I reached my left hand in. And I just put my left finger gently into her palm and she just grabbed on tight. And in that moment, all my fears about not being able to bond with her, washed away. And what got to me was how I could be so afraid when she was so strong. And at that point, I just, she was the most beautiful thing I'd ever seen. And I told her, hey, peanut, it's daddy. So that's when I met my daughter. Now, when a baby is this early, the parents and the doctors are watching it very carefully, trying to guess, is this baby ready to be out in the world? Is it going to make it? And Tom says when she grabbed his finger, that wasn't just them bonding. She felt like she was saying something to him. She made her will very, very clear. The baby declared itself, like declared its will to live. And that was a phrase we heard again and again. Some babies will, if I can use the tempeh, clear themselves over the first few hours and days of their life. That's a neonatologist we spoke to Keith Barrington. You get a gut feeling. And that's Diana's L again, the nurse practitioner. After meeting the baby, that this one looks very fragile or this one can do it. The baby is declared itself. Now, there's a real question as to, like, what does that mean? What are you seeing when something that premature declares itself? And here we ran into a real difference, parents will often see will. An incredible will and resolve. Doctors and nurses. No. Not so much. That sounds a bit too mystical for me. I wouldn't take it as there's a voice inside the baby saying, I'm going to be a fighter, I'm not. One is sick enough not to be able to fight and one isn't. Can you see a spirit and a kid? I think you can see some fight. I call it spunk a lot of times. That is Tracy Hollett, a registered nurse. She was Kelly and Tom's primary nurse. At all children's hospital. And like everyone we spoke to on the hospital side, when it comes to this issue, she chooses her words very carefully. And maybe try to keep things a little bit more neutral than talking about their will to live. Because you know a baby at 23 weeks barely has folds on the outside of its brain, its brain is still smooth for the most part. So who knows what it's capable of thinking or feeling. Well, that's a difficult question. And the truth is, things like spunk may just boil down to physiology. Maybe that baby had a few more lung buds to start with. Maybe it had an easier time in utero, may have nothing to do with will. In fact, the baby grasping the finger of a parent, it's actually a reflex, that the babies have a grasp reflex. I never tell a parent that because they think it's an intentional movement. Because you know, putting yourself in the parent's head, if you've got to decide how much am I going to push, how much of my heart am I going to pour into this little creature? Maybe if you can see something like will or something like intention, if you see, oh, that's a person in there, or maybe if you don't see it. Maybe it's the only way you've got to make this decision. There's my wife, the professional ethicist often says, we don't make important decisions in our life for rational reasons very often. Keith and his wife, Annie Jean-Vier, have done a huge amount of research into the ethics of extremely premature births. But one of the primary reasons we wanted to talk to him is that, in addition to being a neonatologist and a guy who publishes a lot of stuff in this area, he and his wife recently had a baby girl who was born at 24 weeks and five days. She weighed 720 grams, one and a half pounds. And she was actually in my own, and I see you, oh wow. I was actually the director of the unit where she was. So he was in his unit into the place where he usually worked, he saw babies make it. not make it and now suddenly he was a parent in that place. And several weeks after his baby was born, there was a very, very big complication. She actually didn't move at all for about 36 hours. And we thought maybe it was a little-- Maybe it was time. Yeah. So they decided he and his wife to let her go peacefully. But I went back into the NICU to see her. And something happened. He looked down and he saw her lips move barely. She started sucking on a suitor that the nurse had put in her mouth. She was sucking on a pacifier. And it was just a reflex. The most basic baby reflex, the sucking reflex, he knew that. But just that movement of sucking on the suitor changed his mind completely. I went back to Annie and said, we can't stop. I really need to continue and give her the chance. But you knew that the sucking responses are not-- that's a fairly deep brain. Yes, it's a very basic. It's just the brainstem. It's not-- you know, you need a lot more than be able to suck to do well. But as I say, I was trying to be the parent there, not the neonatologist. Well, could you remember if the doctor and you was surprised at the father in you? Yeah, I think I was, actually, a little. Yeah, I think if I'd have been more evidence-based in rational and scientific, I could have gone either way. But just as a father, I couldn't at that point let it go. I just didn't really know how to process it. I felt like she was. I just had this very acute sense that she had just been violently ripped out of my body. I could feel where they had cut her out. I just wanted to put her back and make her safe, and I had all these questions going through my head like, how long does she have to live for us to get a birth certificate for this to be real? I felt like she might die and it wouldn't count, and I wouldn't be a mother, you know what I mean? What if she died? What would happen? Would we have a funeral? They make caskets a size of shoe boxes? I mean, all these like, it's so screwed up that that's the stuff you think about, but your brain goes places, you just can't control or predict. If she knew was she really aware that I was even standing there, was it just a reflex that made her grab my finger and when she grabbed it, did she know that she know I was there and if she didn't know I was there, did she wonder where I had gone? And did she feel alone and is she scared? All she could really do at that point was sit with those questions, and it just became a real thing. This is Radio Lab. And we are spending the whole hour with Tampa Bay Times reporter Kelly Benham and her husband, Tom French. And the story that they're telling us? It's about this limbo, a space that's literally between life and death. We have to tackle some really big questions. Yeah. Well, here's the reason we want, Tom, when did you decide to name your daughter, Juniper? About, I'm about five days after she was born. No, in those five days, pretty much everything in their lives changed. I mean, on the most superficial level, they began their hospital stay day zero in the maternity ward, which had butterflies on the walls and. Which is a roses opening, and everyone's really good looking. Like in an ER sort of way or. Like in a Grey's Anatomy kind of way. We had one super hot nurse, we called her Cupcake, and she had this glossy hair, and you know, people would visit me and they'd be like, "Hey, is Cupcake here? When is Cupcake coming by?" So that's where their hospital journey began, but five days later, everything had changed, and they find themselves on a different floor of the hospital, stranded in this unit, that it's perhaps more than any other place on earth, the physical embodiment of this limbo, the neonatal intensive care unit, the NICU, where they just have to wait. And hoped that that will or whatever it was they saw on Juniper takes hold. We had been yanked out of our lives, and out of everything that we recognized, out of our jobs, out of our house, and we just been dropped into this science fiction. Nothing was recognizable, the babies didn't even look like babies, you know? There was one baby that had his intestines outside of his body, like piled up on his belly like in his back, and everyone's wearing a uniform. I don't know who anyone is, and everything's like beeping and humming, and you don't know how long you're going to be there, and you don't have any sense of time, like day and night don't mean anything, and you know, we're sort of dimly aware of the sun rising and setting out the window. But other than that, it's just, it's just like minute to minute, hour to hour. You're afraid to leave even for, even for an hour to get some lunch because the baby could die. You know, if we went home to get some sleep, would she, would she die? I mean, is that critical? And she had roughly five, six days that went pretty well. And then, that next weekend, she blew a hole in her intestines. That was the real beginning of a lot of problems. And her belly turned dark and got real distended. They were inserting drains in the belly to try to drain away the stool and dunk, and she just had this little straw sticking out of her belly. And then, they couldn't maintain her blood pressure, so I was thinking of everything I could do because you don't want to feel powerless in a situation like that. You want to feel like there's something you can do. So in quiet moments, what Tom would do? Chapter one, the boy who lived. Is he would stand over Juniper's incubator, and you would read her Harry Potter. Mr. and Mrs. Dersley of number four, Pervit Drive, were proud to say that they were perfectly normal. Thank you very much. They were the last people you'd expect to be involved in anything strange or mysterious. As I started reading to her, and as the days went on, she has no idea what I'm reading, right? But there is something there that she responded to. I wanted to say she liked because her sat number would go high at that point. Her sat number, what is it, like her oxygen? The saturation of oxygen in her blood. Ah, Tom says that number on the monitor was one of the only ways that they could get feedback about how she was doing because, you know, her eyes are still closed. There were times when she wasn't moving around a lot. The higher the number, the better. And he says when he would read to her, her numbers would go up. Not just slowly, but instantly. But then, when I got deeper into the story, I read in Hagrid's voice, "Broad it, Professor Dumbledore Sir," said the giant, climbing carefully off the motorcycle as he spoke, and she desadded instantly, and then the larger just going off and going off and going off. And Kelly hit me and she said, "You're scaring the baby." And I'm like, "What, you could see, even before her eyes opened, that she was really responding to what we were doing." She didn't know what a chapter is, but she was in her own way very eagerly waiting for the next chapter. And I don't know a better way to describe one to be alive than you want to find out what happens next. Unfortunately, what happens next is that one night at around two o'clock in the morning, on a rear night that they actually went to sleep at home, they get a call from their doctor. And his first question was, "How far do you live from the hospital?" And that's not a question you want to hear from your child's doctor. We like rush to the hospital, and. And when they get there, they were told. That she did it again. She got another hole, another hole, or a test ins, and she started to really spiral. They'd really go downhill. Her blood pressure and oxygen levels were crashing. She was on 100% oxygen. The ventilator settings were turned up as high as they could go, and she was still struggling and faltering. And you know, once they are giving her maybe 100% oxygen, they can't give her any more. At that point, I had done everything that I could possibly do. This is Fauzi or Shaquille. Neonatologist at All Children's Hospital. She was Juniper's doctor at the time. She says she'd given Juniper everything she could think of. Blood pressure medicine, antibiotics. She'd put a drain in her abdomen. But obviously, it was not enough. Something was wrong. It had to be wrong. We might lose her at any second. The only option left. To take her to the operating room with car open. Clear the intestines, relieve the pressure. How do you do a surgery on a one pound baby? It seems so. Oh, exactly. I mean, you don't. She was so extremely premature, so fragile. So tiny that operating seemed kind of crazy. And Dr. Shaquille began to really consider the idea that maybe this was it. And at that point, I was at bedside looking at her. Trying to figure out what to do. And all of a sudden, she opened her eyes. Really? Yeah. She opened her eyes. Why? And she looked at us. Her eyes were like wide open. And she was looking right at the doctor directly, staring at her heart. And it was a very powerful moment. Dr. Shaquille says she decided right then and there. We're going to surgery. I think she deserves a chance. Tell me more about why you made that decision. Well, typically, babies who are that critical, they are totally unresponsive because they're just fighting for every breath and the ability to just open her eyes at that stage in her life when she had no blood pressure that I could barely record when she had hardly any oxygen. For her to just open her eyes and look at us, it was a very powerful statement that I'm still here. I am here. I am still here. Don't give up. So Dr. Shaquille, some in the pediatric surgeon, told her they want to move forward with the operation. But the surgeon said-- No. The surgeon was adamant that she did not want to do it. She said it's futile. And her blood pressure is so unstable that she will not make it out of the award. And the surgeon told her, even if I can open her up and do the job, her skin is so papery that I might not be able to sew her back up. There are guidelines that medical industries have, even basic things like the Hippocratic oath of Duno harm. That's law professor and ethicist Nita Farahani again. Many physicians legitimately believe that if you have a preterm infant and that infant is in serious peril of spending a life of suffering and pain. And the only way to Duno harm and fulfill your oath is not to do the surgery. But-- She says, if you ask the courts-- you know, right now, the law favors life. The courts have seen very few cases that involve disputes like this. But in every one so far, she says, they've supported the person who's arguing to keep the child alive. Whenever there's life, there's hope. So this is our window. We should do it now. For Dr. Shaquille, the argument that ultimately won the day was simply this. Basically, what I told her was that if you think she's going to die, she is dying right now. As we speak in the unit. So we can either do nothing, and she definitely dies, or we can do something, and she probably dies. But you never know. There is a slim chance. So they're wheeling the incubator with the baby in it, and I'm holding her a little hand, and she's getting ready to go into surgery. And she was looking right at me. And she hadn't done that before. I mean, it really seemed like she was aware that I was there very clearly, and she was locked on my face. So I gave her a little kiss on her forehead, and Tom did the same thing, and then they wheeled her away. How long was the operation? It was-- they paged us much more quickly than we expected to come back. So we knew something was wrong. A nurse ushered Tom and Kelly into a separate room. This little windowless conference room, and the surgeon came in. And she said, you know, she was supposed to go in and clean everything out, and rinse everything off, and find the hole, and patch it, and do all these things. And she said, when she cut the baby open, and touched the baby's intestines with her little probe, the way she described it was everything fell apart. It was just falling apart and falling apart. When you're hearing this? Yeah. Juniper had survived the operation, but barely. So we're thinking, OK, this was an incredibly risky surgery. And we just put her through it for nothing, and I thought there was no way the baby was going to live till morning. I'd been really working hard to avoid thinking about all the bad things that were possibly going to happen here. Just trying to hold on, you know, and I'd sort of thought it was my job to do that. And just kind of funny, kind of stereotypically male of me. And Tom says they were in the car around the time of the surgery. As we're driving, you know, by that time, June Bug and I were about 2/3 of the way to the first book. And this thought just snuck in on me, which was, what if I don't get to finish reading her this book? What if she doesn't get to hear the ending? And you know, she never finds out, you know, what happens to Harry and Hermione and Ron. That thought led in all the other thoughts, very difficult thoughts about all the things we wouldn't get to do with her. And she would never get to know. And I had this terrible thought that, you know, she was in this incubator, this isolad, this plastic box. And I had this terrible thought that she was just going to go from one box to another. And I had to pull over, you know, because I just lost it. And at that point, I wasn't maintaining anymore. There was no holding back this flood of what was happening. And we had a rule, Kelly and I, which was that only one of us got to lose it at a time. And, you know, that was my turn to lose it. We're in a very unnatural situation of neonatal intensive care, which is so recent in the developed world and still doesn't exist in much of the world. And working so hard to save babies is very new. Neutatal, it's just Keith Berrington. In evolutionary history, newborn babies very frequently died. And most parents who have any significant number of children had lost one or two or three or more. And in order to be able to carry on with your life and to provide for the rest of your family, we had to be able to adapt to the death of babies. And now that it's become much less common to lose a baby, even, you know, miscarriages and stillbirths. So now we're realizing how much that hurts. And in the past, maybe we've hidden some of that for ourselves. No way the baby was going to live till morning. But what happened was really strange. She continued to just not die. And the next day, she, you know, she was still there. The surgeon was surprised and-- No one could quite explain it. The more I thought about it, the more I found it, like, surprising and interesting, you know, because she doesn't know that there's a better place, you know, that she's just in this box. And she's got needles coming out of every which way. And tube down her throat. She has no idea that one day, you know, she'll just be held and rocked and will take her out for ice cream. And she'll play with the dog. And I just wondered, like, what is she fighting for? [MUSIC PLAYING] So that became, you know, our job, the best that we could articulate it, was to try to give her some sense of something beyond that place. After the surgery, things did not get easier. She would stop breathing many times a day. Teams would rush into-- Come on, Jean, but come back, come back. I remember the room spinning. And then-- She started to swell for, like, weeks and weeks. But she continued to not die. And she began to gain weight. And, you know, nurses are very superstitious. A lot of them. They won't say the word home. For some reason, when the babies hear that word, this is Tracy Hullet again, primary nurse. They get sick. And we just-- it's a superstition, obviously, but something happens. And sometimes it can be devastating. So what do you say instead? We'll say that place that the baby's going to go when they leave here. Wow, my god, it's so tortured. Sometimes we spell it, which makes no sense at all. But after about four and a half months, Diana and nurse practitioner told us that we might want to think about buying a car seat. That was the first inclination. that we might be able to take her out of there. - That's the first time I've ever imagined a choir of angels singing around mention of car seats. - Car seats, right? But when you wanna have a baby really bad and everybody else has a baby but you and you can't have a baby, things like shopping for car seats become like fantasies, you know, and finally, you know, the doctor gave the all clear and we took the monitors off of her and she was completely free and untethered, not hooked to anything and we strapped her into this car seat and I put a little pair of sunglasses on her 'cause I didn't know if her eyes would be okay in the sunlight, she'd never seen the sun. And we all kind of walked out and Tracy's really not a hugger but we like grabbed her and hugged her and cried and all over her shirt and then we put the baby in the car and we went to Chick-fil-A. (laughing) - We went to Chick-fil-A. - Yeah. (laughing) - That was totally before the gay thing and before I stopped going to Chick-fil-A. - And all in all, how long were you in the hospital for? - Six and a half months. It was 196 days. - How was you to pronounce? What is, can you give us a snapshot of her morning? - Sure. Actually, Tom and Kelly were nice enough to allow us to send a reporter to their house. To meet her. - Good morning. - Good morning. - She's two years old now. - Hi, good morning, Kelly. - All right. - This June bug. Good morning, June bug. - That's Jennifer. - Isn't this Jennifer? - Say hi. - When we got there, she was still. She was still in bed, it was just waking up. She's not being very kind to me this morning. She's not being. But then, she just sprung up, jumped out of bed, and took off. - Where's Jill bug? - Dad was. - Yeah, even to Daddy. - Isn't that funny? - This is, I see you. - Shows. - Was it away? - Come on. Show me where the kitty is. - I know you want to give the kitty a hug. - She's easy. - Don't. - Nice. - She's counting your typical two-year-old. - Uh-oh. - Uh-oh. - Chant off. - And because we were there, Juniper felt it was kind of important if we see some tricks she's learned. - Oh, hello. Yay! Perfect! - Good summer sol. - No, I thought this is radio, so they have no idea what you just did. - Good summer sols. - You know, it's interesting because as journalists, again, we spend a lot of time chronicling, sometimes very terrible things. And what's interesting is that yesterday morning, by journalistic standards, nothing happened. - You know what we need to do is change your diaper. - It was, it was, it was, wouldn't even be on journalistic radar. - Uh-huh, uh-huh. - What you got on that? - But what you know is a parent. - Here, come some more. - Especially after you've been through what we went through. - If you come see mommy, I want to kiss you. - It was, everything happened. - I'm not kissed yet. Nothing you can do about it, either. Are you ready? - Everything happened yesterday, in those, in a couple hours. The entire world was contained inside that morning. - Can I have a scoop of kisses? - I'm kissed. - And all of her, all the blank chapters of her life were inside that morning, waiting to be written. - Which one you want this book? - Me too. - And, and do you feel like you're out of the woods? - Well, both Tom and Kelly said no way. And then Tom told us about these flu shots that Juniper gets. - They're not just flu shots. They're like, flu shots, like super flu shots. And they, there's four shots you get. And I swear to God, they cost $14,000 for those four shots. And- - That is, that's a real number, you just said? - That's a fact. - That's a fact. - They are designed to help protect her from RSV. - Which is a virus that, in most people, just presents us a common cold. - But, you know, her lungs are still recovering and are still developing and RSV can be devastating. - And there are some other concerns that could still creep in down the road. Some studies have shown that kids who are born prematurely struggle more in school with reading and math that's often they're more susceptible to depression and anxiety. - But I will say that we took her to visit a preschool the other day. And we took her there and set her down and she just took off and like went up to these giant children and started taking their toys and they were singing the wheels on the bus and you could see it in her eyes. I know that song. And she didn't care about Tom or I one bit, you know, she was totally there with those kids and she was so ready. And I thought, wow, she might be okay. She is okay. In case you're wondering, Keith Burrington, the new anatologist we spoke to earlier, when we asked him how his daughter is doing, I had a curiosity, how is Violet doing now? - She is great. She's coming to the end of her first grade in school and she's, she's, I know, she's perfect. - So we should say these are two stories of babies who made it. But in this brand new frontier, of course, there are many stories of babies who don't. - So, Pat here again, that was 2013. It's 2026 now. And re-listing to this, I wondered, how is Juniper doing now? So I texted her mom, Kelly, and she wrote right back and said, you should ask her. - Is she gonna be doing this? - Hello, probably. - Her dad, Tom and her little sister brought her over to a studio in Indiana near where they live to chat with our producer, Anisa and I. - Yeah, hi. - Hi. - Well, thanks for talking to us. - Of course. - Yeah, how's your day going? - It's going good. I got picked up during math. So I'm very happy about that. - You got picked up during math? - Yeah, we won't really be doing it a lot. - We got you out of school. - So Juniper is 15 years old now. And when we called her, she was about to finish eighth grade. - So you're going to high school next year? - Yeah. - Oh my god. - Are you excited? - In between, I'm nervous, but excited. At the same time, I'm excited for new friends and a new school and new classes, but I'm also nervous to leave my friends that are you behind me or they're going to different high school. So I'm not excited about that. - Juniper says school hasn't been a very easy place for her. - Yeah, kindergarten school. It's great. Didn't really go as fast as I would want to do. I was just super lonely. I mean, it's kind of hard for me to make friends. - And some of that, she says, had to do with what she went through as a baby. - I mean, I'm super small. Some kids tease me about it. Like, I'm tall as a new and you know, you're two years older than me and stuff. But, I mean, look at small bars. You know, she's super tiny. Look at the stuff she can do. - And besides being smaller than the other kids in her class, Juniper says the only other physical thing that she has to deal with is a kidney condition. - I mean, I love salt, but I can't eat too much of it and that really annoys me. - What's actually been harder is the emotional side of things. - I have to deal with PTSD, even though I was so small, I can't really remember, but you know, it's still affected me in a lot of ways. - She's struggled with anxiety, controlling her emotions. But the thing is, I don't really think about it a lot. You know, I don't only think about how being a microphone has really affected my life. You know, I just live my life like a normal human being and I don't only think, "Oh, yeah, I have this crazy story to tell." And, you know, I was born blah, blah, blah, this early. - So what does your life look like outside of school? Like, what are you most into? - Horses, horses, horses, horses. So. - Juniper says a few years ago her mom started taking her to this barn. - A strong quick glance, which is still even its way from our house. And I fell in love. I feel like the horse for me is like a best friend. It teaches people, Supposing me how to control my emotions, because when you are angry or mad or frustrated, then that inflicts on them, and so they act out, they lash out. So I have to then have to be calm. You know, it makes me let go of all my anger, and I can just be free. I mean, just be quiet. And working with the Horses has helped Juniper make a lot of people friends too. There was Natasha, a color auntie. A bunch at the ranch. My instructor, John, they're like a second family. And also at school. Yeah, I spend most of my time with my two best friends, Meena and Katie. We just have fun. I'm really part of how far I've come. You know, I went from, you know, having no friends, being super lonely, to having all these bunches of friends. And she's a friend and best friends, you know, and I'm really proud. Then I can be myself with them, you know, I mean, it's really special. And I mean, my mom, you know, she described how she wanted her daughter to be. And you know, it's not the person she described is me. You know, I'm loud. I like Horses. I love just thing at the top of my lungs, but I sound terrible. That, that isn't me. Yeah. Yeah. 23 weeks, six days was produced by Jada Abramrod and Mack Yelty. And the update was produced by Anisa Vita. Kelly and Tom wrote a book about Juniper that came out in 2016. It's called Juniper. It's fantastic. We'll put a link to it on our website. And also on our website, Kelly sent us a bunch of pictures of Juniper writing, which are very impressive. So all that's at radialab.org and on our Instagram @radialab. Thanks for listening. We'll see you next week. Hi, I'm Junkal and I'm from Brooklyn and here are the staff credits. Radialab is hosted by Lulu Miller and Latif NASA. Soren Wheeler is our executive editor. Sarah Sandback is our executive director. Our managing editor is Pat Walters. Dylan Keefe is our director of sound design. Our staff includes Jeremy Blue, W. Harry Fortuna, David Gabel, Maria Paz Gutierrez, Sindu Nyanem Sambandan, Mack Yelty, Mona Madgalka, Annie McHughan, Alex Neeson, Sarah Cari, Natalia Ramirez, Joanna Strogatz, Annie Zavitsa, Ariad Wack, Molly Webster, and Jessica Young, with help from Gabi Santos and Maya Appelby Malamad. Our fact checkers are Nora Belglidia, Hilary Elkins, Rachel Gross, Diane Kelly, Emily Krieger, Natalie Middleton and Sophie Samae. Hi, I'm Aubrey, calling from Salt Lake City, Utah. Leadership Support for Radio Lab Science Programming is provided by the Simon Foundation and the John Templeton Foundation. Foundational Support for Radio Lab was provided by the Alfred P. Sloan Foundation.