Radiolab - Update: 23 Weeks 6 Days

Episode Date: March 23, 2016

An update on Juniper French, a tiny baby, born at 23 Weeks and 6 days -- roughly halfway to full term. And a whole universe of medical and moral questions. Technology has had a profound effect on how we get pregnant, give birth, and think about life and death. The decision to become parents was not an easy one for Kelley and Tom. Even after they sorted out their relationship issues and hopes for the future, getting pregnant wasn't easy. But, thanks to a lot of technology, they found a way to a baby. Then, about halfway through the pregnancy, the trouble began. Neonatal nurse practitioner Diane Loisel describes helping Kelley and Tom make the most important decision of their lives. And Nita Farahany helps Jad and Robert understand the significance of viability, and how technology has influenced its meaning...making a difficult idea even harder to pin down. Kelley and Tom had hoped that meeting their daughter would be the happiest moment of their life. But when she came early -- at just 23 weeks and 6 days, that moment was full of terror and an impossibly difficult decision. And when the time came to face it, Tom and Kelley turned to their baby for help. Seeing their daughter for the first time, they looked for her to "declare herself." That's a phrase that comes up again and again to help guide decisions in Neonatal Intensive Care Units. But parents and medical professionals have very different ideas about what the phrase really means. Nurse Tracy Hullet and Neonatologist Keith Barrington describe the difficulty of interpreting the fuzzy boundary between a baby's strength of will, and simple physiology. Meanwhile Kelley and Tom are left to wonder, and wait. The Neonatal Intensive Care Unit, or NICU, is a land of emotional and medical limbo. Kelley, Tom, and their daughter Juniper got stranded in this limbo for months, fighting to survive, and finally get to the next chapter of their lives. Their doctor, Fauzia Shakeel, describes the moment when Juniper's life hung in the balance, and Keith Barrington helps us understand how our newest technologies open the door not only to hope, but also to a pain that we, as humans, have kept hidden for most of our history. And finally, Kelley, Tom, Nita Farahany and Juniper herself, nearly 5 years old, give us an update on her life and what has happened since our story originally aired.  Juniper and Kelley (Photo Credit: Kelley Benham)    

Hey, this is Chad. So this is an episode coming up that we originally aired about three years ago. But the issues in here seem to be sort of in the air still. Part of a kind of ongoing, never-ending national conversation touches on some cases before the Supreme Court. So we certainly haven't been able to stop thinking about it. So we thought we would share this with you again. And at the very end of the hour, we have a little update that we think is super interesting. So here it is. Wait, you're listening. Okay. All right. Okay.

All right. You're listening to Radio Lab. Radio Lab. From W-N-Y-C. See? Yeah. Kelly, can you hear me? Yeah.

Okay, good. All right. So we're just doing this because... Because that article you wrote was one of the most amazing things that we've ever read. Oh, thank you. Okay, I'm Chad Ibram Ron. I'm Robert Crowicz. 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. I'm 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? Were you one of those people who, 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. 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 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. Tom French, also a journalist at the Tampa Bay Times, or he was at the time, he 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, you know, a poker master or whatever. No, the only world tour I would have been interested with 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, if they had anything new because I had, you know, I usually check out their gargoyles and their 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 said, a minute, maybe you are not thinking about this straight. You're acting as 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 need 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 walkie 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. 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 a dish, forcefully impregnated with Tom's 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 way 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 appear.

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 like the expectant parent mode? Oh, yeah. I touched up to 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 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's 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. 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, and 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 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 it, 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 has 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. Like, you know, 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 speed is super, super fast, so it sounds like a rabbit or something.

You just hear it on the sonogram? Yeah, this heartbeat pops up, and then there's the baby, and you can see it. And she looks fine. 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 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 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 draw a 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 Fondren versus State, for example, the court ruled that a woman who commits an abortion on herself is guilty of no crime. 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 a woman's right to choose, as we know. Right. 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?

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. 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 begin, Mr. Justice, 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.

Go like this. Three weeks. The fetuses' 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 sacks 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 when the baby's born. And that, combined with IV nutrition, new super small ventilators, moved the line of viability back to her. 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 Nita,

one day the line could jump way back, which will make things really tricky. If, for example, we get to the point where modern science is 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 to 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, the 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. Hmm. I felt like 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 eat 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 no was going to be the answer, we needed 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 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, 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. Introventricular 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 to pain. Finally, a doctor came in and was like, Yeah, you're in labor, and we have to go right now.

So then it was like super, super quick. O.R. 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 what did she look like? Well, I didn't see her then. I just saw, like, her kind of whiz 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. Hi, this is Kelly French. This is Tom French leaving... To credit, here we go.

Okay, here we go. I'll try it. Radio Lab is supported in part by the National Science Foundation. And the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. Hi, this is Diane Moyceau. More information about Sloan can be found at www.sloan.org. Hey, I'm Chad Abumrad. I'm Robert Krollwitch.

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 was 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 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 gray 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 C-section, and their daughter, who at 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. In the incubator.

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, you know, all the things that 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. 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 something.

It's 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, 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. 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, 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 was 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. 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 term, to 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 Diane Lazzell again, the nurse practitioner. After meeting the baby, that this one looks very fragile or this one can do it. The baby has 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 in a kid? I think you can see some fight. I call it spunk a lot of times. That is Tracy Hollett. I'm 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. 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? Oh, 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 grasped.

being 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. to make this decision. As 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 in front. days. She weighed 720 grams. One and a half pounds. And she was actually in my own NICU. Oh, wow. I was actually the director of the unit where she was. So he was in his unit, in 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. 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 zoo that... 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 response is not, that's a fairly deep brain. Yes, it's a very basic. It's just the brainstem. It's not, you know, and 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 and not the neonatologist. Well, could you remember if the doctor in 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 and rational and scientific, I could have gone either way, but just as a father, I couldn't at that point let her 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 like violently ripped out of my body. And I could feel where they had cut her out, you know. And like I just wanted to put her back and make her safe, you know? Yeah. And I had all these questions going through my head, like, you know, Like, how long does she have to live for us to get a birth certificate for this to be real?

Like, I felt like she might die and, and, like, it wouldn't count. And I wouldn't be a mother. You know what I mean? And, and, like, what if she died? Like, what would happen? Like, would we have a funeral? Do they make caskets the size of shoeboxes? 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 it, like, if she knew, was she really aware that I was even standing there? Like, was it just a reflex that made her grab my finger? And 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.

We sit with those questions. And it just became this waiting game. We'll continue in a moment. Hey, I'm Chad Abumrod. I'm Robert Krelwich. 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. Although here's the other one. Tom, when did you decide to name your daughter Juniper?

Hmm. About five days after she was born. Now, 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. Images of roses opening. And everyone's really good looking. Like in an ER sort of way? Like in a Graze Anatomy kind of way. We had like one super hot nurse, we called her Cupcake.

And she had this like 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 hope that that will or whatever it was they saw in juniper takes hold we had been like yanked out of our lives and out of everything that we recognized you know out of our jobs

out of our house and we just been dropped into this like science fiction nothing was recognizable babies didn't even look like babies you know There was one baby that had his intestines, you know, outside of his body, like, piled up on his belly, like in his bag.

And everyone's wearing a uniform. 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 like minute to minute, hour to hour. You're afraid to leave 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 die?

I mean, it's 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 gunk 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 1, the boy who lived.

Is he would stand over Juniper's incubator, and he would read her Harry Potter. Mr. and Mrs. Dursley of number four, Privet 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 that?

Like her oxygen? The saturation of oxygen and her blood. 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 were still closed every time 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,

about it, Professor Dumbledore, sir, said the giant, climbing carefully off the motorcycle as he spoke. And she desatted instantly. And the alarms were 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 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 wanting to be alive. Then you want to find out what happens next. Unfortunately, what happens next is that one night at around 2 o'clock in the morning. On a rear night that they actually went to sleep at home, they get a call from their doctor. His first question was, how far do you live from the hospital? And, you know, that's not a question you want to hear from your child's doctor. We, like, rushed to the hospital.

And when they get there, they were told... That she did it again. She got another hole, another hole in her intestines. And she started to really spiral and 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 your baby 100% oxygen, they can't give her any more. At that point, I had done everything that I could possibly do. This is Fausia Shaquille. Neonatologist at all children's hospital. She was Juniper's doctor at the time. She said 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. Terribly wrong. We might lose her at any second. The only option left? To take her to the operating room and cut her open. Clear the intestines, relieve the pressure.

How do you do a surgery on a one-pound baby? 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 wide. And she looked at us. Her eyes were like wide open, and she was looking right at the doctor directly, staring at her hard. 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're totally unresponsive. Yeah. 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 summoned 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 OR. 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 do no 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 do no 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 everyone 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 and I'm holding her 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. And you're hearing this? Yeah. Juniper had survived the operation, but barely.

So we're thinking, like, okay, this was an incredibly risky surgery. And we just threw it for nothing. and I thought there was no way that 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 was kind of funny. Kind of stereotypically male of me. And Tom says they were in the car around the time of the surgery.

were driving, you know, by that time, Jumbug and I were about two-thirds of the way through 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. that she would never get to know. And I had this terrible thought that, you know, she was in this incubator, this isola, 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.

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. Neonetologist Keith Barrington. 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 miscarriages and stillbirths. So now we're realizing how much that hurts. And in the past, maybe we've hidden some of that from 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. Yeah. And she's got needles coming out.

of every which way. And a 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 can 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, Jimbo, 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, Diane, that nurse practitioner, told us that 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 seat. 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. 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. We went to Chick-fil-A. Yeah. 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 just 196 days. How is Juniper now?

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, Call. Hi. This Junebug. Good morning, Junebug. Miss 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 cuddly this morning. But then, she just sprung up, jumped out of bed, and took off. Where's Zumba? Huh? Daddy's. Yeah, he went to Daddy. Is that funny? Come on.

Show me where the kitty is. I know you want to give the kitty a hug. Sheezy. She's kind of your typical two-year-old. And because we were there, Juniper felt it was kind of important, we see some tricks she's learned. Good somersaults. You know what, though?

This is radio, so they have no idea what you just did. Good somersaults. 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 wouldn't even be on journalistic radar. But what you know as a parent,

Come see Mommy. Especially after you've been through what we went through. If you come see Mommy, I'm going to kiss you. Was everything happened. I'm going to kiss you. Nothing you can do about it either. Were you ready? One.

Everything happened yesterday in that couple hours. The entire world was contained inside that morning. Can I have Eskimo 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? Come here. And do you feel like you're out of the woods?

Well, um... 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, um, 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'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, and 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. 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, um, 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. And now for an update, we originally aired this story in 2013 when Juniper was two. Here's tape from just a few months ago. How old are you? Four. Four. Oh, my gosh. You're about to turn five in April.

You know that? Yep. What's going to happen when you turn five? I'm going to be this tall. Wow. Juniper is about to start kindergarten, and her and Tom and Kelly live in Indiana now, where Tom and Kelly teach journalism at the Indiana University Media School. I actually happened to be in Indiana just yesterday, so I hooked up with Tom and Kelly.

We stood on the side of a busy street in downtown Bloomington, and they gave me an update. And they told me that in nearly three years since we aired this story, and this is generally not what you would expect from a baby born that early. Physically, we have had shockingly few problems. Like, she hasn't had any, I got to knock on some wood somewhere. She never had, like, a horrible bout of the flu, or it was never back in the hospital. Her kidneys are a little bit small, and they're watching that.

But there's a savagery to her that is amazing. They told me that she's this extremely headstrong, active child, really into climbing trees. How did you get up there? I'm trying. You climbed? Yeah. But you're so high up. She goes horseback riding.

She does gymnastics. Does she have some awareness of the incredible journey she went through just to be four and a half? Do you guys talk about it with her? Every night we talk about it because every night she asks, tell me the story about when I was a with a tiny baby in the hospital. When I was very sick. Tell me about when I was sick. Tell me about when I had the hole in my tummy.

So, you know, for a long time I would just tell her the story. When you were born, you were born very early, a lot more early than you were supposed to be born. You were super extra small. I called the hospital over the summer and I said hey like every night we're talking about this can I show her the NICU like would you let me just show her the space and what an incubator looks like and they were amazing about it

and so they set up an incubator in an empty room and they let her come in and just play in the room and she took her little doll baby that I ordered for her on preemiddlebaby.com or whatever that's like the size and weight that she was when she was a baby. Oh, is that a real thing? It's a real thing, yeah.

Oh, wow. So I got her this doll that's, so she could get an idea of how small she was. I don't know, I thought it would be useful someday. So she took it to the NICU, and she put it in the incubator, and we showed her how we would reach our hands through the little portholes and hold her hand,

and she reached in and held her little baby's little cloth hand. And then because she's juniper, and of course she would do this, she climbed into the freaking incubator and laid down and asked Tracy the nurse. nurse to close the lid. Whoa. Yeah.

Like she... What was that like for you? Was that like... I have a photo of it. It's amazing. Traumatic flashback? No, it was really cool. And she said at one point during the visit, this woman walked by the room.

And she kind of stuck her head in the doorway and her eyes were all red. And she had that look about her like, she was a couple days postpartum. And I thought, oh God, you know. Tracy kind of whispered in her ear, Tracy, the nurse. and she looked at Juniper, and she said, oh, my God, she's so beautiful. And then she told us that she had just had a baby a few days before that was born at 23 weeks and six days.

Hi. Hi. Hi. Hippity. Hey. Hippity hump. And hippily. Now, speaking of that specific chunk of time, 23 weeks, six days, we ended up checking back in with Anita Farahani, professor of law and philosophy at Duke University, about that whole viability question, like that line of when a preterm infant comes viable, which at the time we did the story

seemed to be roughly around 24 weeks on average. Has that changed at all? And she pointed us to a study that was done in 2015, which did sort of a big survey of outcomes for preterm infants, and it basically argued that we might want to push that line back even further. The study author believes that 22, weeks is the new standard for viability. And that 23 weeks and 23 weeks and six days that that's too late.

She says this is now the new conversation, 22 weeks, not 24. You know, this is something that physicians and hospitals are being educated about. And look, if we're already at 22 weeks, you know, and it's just been, what, two years since we last talked about this? Yeah, three years at most. I mean, so in three years, if we've moved back two weeks, then talk to me in another quarter of a century, and we'll be at the beginning. She thinks it's just a matter of time before we get to that artificial womb. In any case, last thing I'll say by way of updates is that Tom and Kelly are about to release a book about their experience. It's called Juniper, and normally I'm not one to gush, but this book is something else. Like we got into this story because of some really haunting articles that Kelly had written for the Tampa Bay Times. And this book takes those articles so much farther.

It goes into way more detail than we could ever get into. It is, yeah, it's totally worth reading. And if you want to pre-order it, there is a link on our website. Go to radio lab. We got to say, Radio Lab is produced by Jad Auburnrod. Really loud. The Radio Lab is produced by Jad Aramaw. Perfect.

Soren Wheeler is Senior Editor. Soren Wheeler is the director. Dylan Keefe. Dylan Keefe. Is Director of Sound design. Sound design. You had to say the whole thing, though. Dylan Keefe.

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