23 Weeks 6 Days

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1:00This 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. When I read it, it just destroyed me. I sent it to Chad and I was like, you got to interview Kelly about this story. He did and the episode it became is still one of my favorite episodes of the show ever. When we started talking about playing it again, I wondered how's everybody doing now all these years later? I checked in. I really didn't know what to expect. We found was very moving. That's at the end. I hope you'll stick around and listen to it. First, here's the original episode 23 weeks, six days. Okay. Okay. All right. You're listening to radio lab from WNYC.

2:03Yeah. Three, why? Kelly, can you hear me? Yeah. Okay. I'm 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 Crowich. 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. No. 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. Okay. She's a reporter for the Tampa Bay Times in Florida. Maybe 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...

3:04Ever 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. And 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, yeah. 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. That's 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.

4:04I wanted to see Spain and Greece and... The world tour on the cruise ship where you get to be the poker master or whatever you think of 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. But she was insistent. Oh, I stuck to it. She saw our daughter very clearly. Oh, yeah. And saw that I was destined to be that little girl's father. And was that a happy, gentle disagreement or the other kind? Oh, it 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. What turned you? 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. They had anything new because I had...

5:05You 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 like 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 went home and wrote me this long letter. And I was over him by that point. I wasn't looking back. So you know, over a few months.

6:05Took 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-based or method. There's like kind of a process that they walk you through. After turkey-based or... IVF. Test tube stuff. 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. So they said, well, 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 pregnate it with tomasperm. 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 way too early. So the line was super, super faint.

7:05It 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 appear. That is everything about this is so high-tech, right? Wow. And did you see what you wanted to see? Yeah, 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 expected parent mode? Oh, yeah. You touched up to paint. I patched the little holes in the wall. Everything was perfect. Everything was absolutely perfect. Well, it wasn't. Five months into her pregnancy, 20 weeks, which is just about halfway because the full-term

8:05is 40. Kelly, was it 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. It was 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.

9:05There's a doctor say something or what happened? 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. But 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 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. And then all of a sudden, there it was.

10:15Just this heartbeat. This is sound she recorded on her cell phone. Baby's heart's beating super, super fast. So it's sound 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. Then they started just pumping 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 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. That's the limit.

11:17So four more weeks? Yeah, it was almost like they'd drawn a line in the sand. 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 Thondrinburg, the state, for example, the court ruled that a woman who commits an abortion on herself is guilty of no crime. OK, so here's the story as I understand it, Robert. 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 in 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?

12:17Now that is the million dollar question. This is Neet 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 the court considered what was known about fetal development. And there are charts that show this. You go like this, three weeks.

13:18The 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.

14:22But 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.

15:26They 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 is 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.

16:2753? Yeah. Whatever we do. Whatever we do. There was a small chance that she could be fine. What were those chances? About 20. Hmm. I felt like 20%. You know, it's not an impossibility. It seems 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 Tom and Kelly was, do they want the doctors to do that?

17:30Do they want them to pursue every measure possible or no? 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 no was going to be the answer, we need to just say that before the baby came. That was the worst night ever. Uh, you're trying to make up your mind about 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

18:33pushed 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.

19:37We had some more questions and a nurse practitioner from the NICU came to the room. Yes, my name is Diane Loisell. I'm a neonatal nurse practitioner. This is the next day. I 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 a pain of 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. The baby came out crying and active. Then we should do everything. We can't 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.

20:47The baby was the 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, I hear 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. What did she look like? Um, why 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.

21:55We'll be back in just a moment. I haven't seen my son since 2012. This is Deborah Ties. The disappearance of her son, Austin, is one of the biggest missing person cases in the world. What do you want from me? I should sell the mystery. I know that my son is somewhere alive. Listen to Where Is Austin Ties? From MPR's embedded and BBC Radio 4. On the MPR app or wherever you get your podcasts. Hey, I'm Chad Abumrat. 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. 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.

22:55Now, 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 have 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? And she has shown us that so many... 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,

23:56with 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 incubate her. For the first time. And she was like... 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 they're supposed to have. But 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. She had bruises all over her body and she had a black eye.

24:58Just from the... you know, they were very careful with them when they're born. 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 of 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,

26:03barely 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. And so she had me... I'd already washed and sterilized my hands once, and she had me do it again. And she showed me how to reach in through this little round porthole 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,

27:03all 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 my Nema 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?

28:03Is it gonna make it? And Tom says when she grabbed his finger, that wasn't just them bonding. He 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, declare 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 elegant, the nearest 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. Inocritable, 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,

29:05I'm gonna 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 in a kid? I think you can see some fight. I call it spunk a lot of times. That is Tracy Hollett. 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. I 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... Fight. 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 is actually a reflex. That the babies have a grasp reflex.

30:07I never tell a parent that because they think it's an intentional movement. Because you know putting yourself in a 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-Vierre 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.

31:07Oh 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's 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...

32:09...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. 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 and you? Yeah, I think I was actually a little. Yeah, I think if I'd 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.

33:12I could feel where they had cut her out. And I just wanted to put her back and make her safe. And I had all these questions going through my head like, you know... 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? And what if she died? What would happen? What do we have a funeral? Do 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. And if she... I wondered if she knew... was she really aware that I was even standing there? Was it just a reflex that made her grab my finger?

34:13And when she grabbed it, did she know... Did 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 this waiting game? I haven't seen my son since 2012. This is Deborah Tice. The disappearance of her mother. She was a child of the same age. She was a child of the same age. She was a child of the same age. What continued in a moment? I haven't seen my son since 2012. This is Deborah Tice.

35:13This is Deborah Tice. The disappearance of her son, Austin, is one of the biggest missing person cases in the world. What do you want from me? I should have the mystery. I know that my son is somewhere alive. Listen to Where Is Austin Tice? From MPR's embedded and BBC Radio 4. On the MPR app or wherever you get your podcasts. Hey, I'm Chad Abumrat. I'm Robert Krollwich. This is Radio Lab. And we are spending the whole hour with Tampa Bay Times reporter Kelly Benham and her husband, Tom French. 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 to. Tom, when did you decide to name your daughter, Junber? 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

36:13in the maternity ward, which had butterflies on the walls and... Images of roses opening. And everyone's really good looking. Like in an ER sort of way or... Like in an Grey's Anatomy kind of way. We had one super hot nurse, we called her Cupcake. And she had this glossy hair. 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 like yanked out of our lives, and out of everything that we recognized,

37:15out of our jobs, out of our house. And we just been dropped into this science fiction. Nothing was recognizable. Babies didn't even look like babies. 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. You know, we're sort of dimly aware of the sun rising and setting out the window. But other than that, it's just like minutes, minute, hour to hour. You're afraid to leave even for an hour to get some lunch because the baby could die.

38:16You know, if we went home to get some sleep, 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 have number four,

39:17a private drive. We're 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 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, bowed at Professor Dumbledore Sir, said the giant, climbing carefully off the motorcycle as he spoke, and she desadded instantly.

40:19And the larger just going off the motorcycle. And Kelly hit me and she said, you're scaring the baby. And I'm like, what do you, 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. Then 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 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.

41:19They'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 baby 100% oxygen, they can't give her any more. At that point, I had done everything that I could possibly do. This is Valzia Shaquille. Neonatologist at all children's hospital. She was Juniper's doctor at the time. Even Juniper, everything she could think of, blood pressure medicine and antibiotics. She'd put a drain in her abdomen. But obviously it was not enough. Something was wrong. Tidably wrong. We might lose her at any second. The only option left. To take her to the operating room with car open. Clear then test ins. 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.

42:19And 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.

43:21When 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 it's, she, her blood pressure is so unstable that she will not make it out of the award. And the surgeon told her even if I could 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.

44:24And the only way to do know harm and fulfill your oath is not to do the surgery. But she says if you ask the courts. So 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 is 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. Well. 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. 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.

45:27And she was locked on my face. So I know 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. And 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 babies and testons 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 move? Yeah. Juniper had survived the operation but barely.

46:27So we're thinking like, okay, this was an incredibly risky surgery and we just put her through it for nothing. 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 sort of thought it was my job to do that. And it's kind of funny. It's 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, Juniper and I were about two thirds 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?

47:31Hermione 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. She would never get to know. And I had this terrible thought that, you know, she was in this incubator, this Isolation, 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. At that point, I wasn't maintaining anymore. There was no holding back this flood of what was happening. We had a rule, Kelly and I, which is 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.

48:31And working so hard to save babies is very new. New Natalysis, 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. 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 next day she was still there.

49:35The surgeon was surprised. 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, 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 we'll take her out for ice cream and she'll play with the dog. And I just wondered, like, what is she fighting for? 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.

50:38After the surgery, things did not get easier. She would stop breathing many times a day. Teams would rush into... Come on, Jimbo, come back, come back. I just remember the room spinning. And 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 Hullett 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 are you saying instead? I would say that place that the baby is 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, Diane, that nurse practitioner, told us that we might want to think about buying a car seat.

51:39That was the first inclination that we might build taker 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 want to 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. Because 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.

52:43That 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 is you to pronounce? 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. She's two years old now. Hi, good morning, Kelly. This is your bug. Good morning, you bug. This is Jennifer. This is Jennifer. Say hi. She was still in bed. She was just waking up. She's not being really covered. She's not being...

53:46But then she just sprung up, jumped out of bed, and took off. Where's your bug? Dad was... Yeah, even to daddy. Is that funny? Yes. Was it a way? Show me where the kitty is. Oh, great. I know you want to give the kitty a hug. She is a don't. Nice. She's counting your typical two-year-old. Chant off. And because we were there, Juniper felt it was kind of important that we see some tricks she's learned. Oh, hello. Yay! Perfect.

54:48Good summer sol. No, I thought this is radio, so they have no idea what you just did. Good summer sols. Well, 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, we need to do a change in paper. It was...it was...it wouldn't even be on journalistic radar. You forgot about it. But what you know as a parent... Come see mom. Especially after you've been through what we went through. If you come see mommy, I want to kiss you. Was everything happening? I want to kiss you. Nothing you can do about it, you know? You ready? Everything happened yesterday in those couple hours. The entire world was contained inside that morning.

55:48Can I have a skim off kisses? And all of her... All the blank chapters of her life were inside that morning, waiting to be written. Which point you went to this book? 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 Juno Brigades. They're not just flu shots. They're like... Flu shots, like super flu shots. And there's four shots you get. And I swear to God, they cost $14,000 for those four shots. And... That is 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 as 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.

56:51Some 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. 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.

57:54In case you're wondering, Keith Barrington, the new anatologist we spoke to earlier, when we asked him how his daughter is doing? At a curiosity, how is Violet doing now? She is great. She is coming to the end of her first grade in school. And 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 we listened 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 going to be doing this? Maybe.

58:54Her 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 do 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. 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.

59:54kindergarten school. eighth grade. Didn't really go as fast as I would want to do. I was just super lonely. I mean, I'm, 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. I'm tall as a new and you know, you're too used to 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'm 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, I don't really think about it a lot.

1:00:57You know, I don't only think about how being a micro-peamie 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 respond blah, blah, blah, this early. So what does your life look like outside of school? Like what are you, 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 clant, 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, especially 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.

1:01:58You 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. I went from having no friends, being super lonely, to having all these fun shows of friends. 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. 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 as me, you know. I'm loud, I like horses.

1:02:58I love just seeing at the top of my lungs, but I sound terrible. That is me. Yeah. Yeah. 23 weeks, six days was produced by Jod Abhamrod and Matt Kelti. 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 riding, which are very impressive. So all that's at radialab.org and on our Instagram at 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.

1:04:00Sarah Sandback is our executive director. Our managing editor is Pat Walters. Dylan Keef is our director of sound design. Our staff includes Jeremy Blue, W. Harry Fortuna, David Gabel, Maria Pas Gutierrez, Sindo Nyarnam San Bandhan, Matt Kielty, Mona Madgalka, Annie McEwen, Alex Niesen, Sarah Kari, Natalia Ramirez, Joanna Strogaetz, Anisa Vita, Ariad Wack, Molly Webster, and Jessica Young, with help from Gabi Santos and Maya Apobimalamid. 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 radialab science programming is provided by the Simon Foundation and the John Templeton Foundation. Foundational support for radialab was provided by the Alfred P. Sloan Foundation.