Radiolab - 23 Weeks 6 Days

Episode Date: September 11, 2026

When Kelley Benham and her husband Tom French finally got pregnant, after many attempts and a good deal of technological help, everything was perfect. Until it wasn't. Their story raises questions that, until recently, no parent had to face… and that are still nearly impossible to answer.This hour, which we first released in 2013, we spend the entire episode on the story of Kelley and Tom, whose daughter was born at 23 weeks and 6 days, roughly halfway to full term. Their story contains an entire universe of questions about the lines between life and death, reflex and will, and the confusing tug of war between two basic moral touchstones: doing no harm...and doing everything in our power to help. Kelley has written about her experience in a brilliant series of articles in the Tampa Bay Times. If you want to know more about what we talk about in the update tacked onto the end of this episode, check out the links below: This Photo Here (https://zpr.io/ZvMD42u9hzuu) Plus This Video Here (https://zpr.io/8ewZUD368TzP) Check out the book that Tom and Kelley wrote about Juniper here:Juniper: The girl who was born too soon. (https://zpr.io/8ewZUD368TzP) And when you're done listening to the episode, be sure to check out the video below--but be warned, it does contain spoilers. 23 Weeks 6 Days VideoEPISODE CREDITS:Reported by Jad AbumradProduced by Matt Kielty and Jad AbumradUpdate produced by Pat Walters and Anisa Vietzewith mixing help from Jeremy Bloom Sign up for our newsletter!! It includes short essays, recommendations, and details about other ways to interact with the show. Signup (https://radiolab.org/newsletter)!Radiolab is supported by listeners like you. Support Radiolab by becoming a member of The Lab (https://members.radiolab.org/) today.Follow our show on Instagram, Twitter and Facebook @radiolab, and share your thoughts with us by emailing [e-mail] support for Radiolab’s science programming is provided by the Simons Foundation and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Hey, this is Radio Lab. I'm Pat Walters, one of the editors here. And this episode we're about to play is, well, it started as a newspaper story that a friend of mine, and actually one of my first editors in journalism, wrote way back in 2012 for the Tampa Bay Times. And when I read it, it just destroyed me. And I sent it to Jad, and I was like, you got to interview Kelly about this story. And he did. and the episode it became is still one of my favorite episodes of the show ever. And when we started talking about playing it again, I wondered, how's everybody doing now all these years later? So I checked in.

I really didn't know what to expect. And what we found was very moving. That's at the end. I hope you'll stick around and listen to it. But first, here's the original episode, 23 weeks, six days. Wait, 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.

Rewind. Kelly, can you hear me? Yeah. Okay, good. All right. So we're just doing this because. Because that article, you're always one of the most amazing things that we've ever read. Oh, thank you.

Okay. I'm Chad. Ron. 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. I'm sure there are stories like this elsewhere, but somehow... Not too many. Yeah, maybe not.

So we're going to devote the entire hour to just this one story, which I think is a first for us. I think it is. And the story comes to us from a woman named Kelly Benham. 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, 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. 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 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, Wait 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. 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. I 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 the round 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 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. She's totally oblivious. she's just right there. So now I thought, oh my God, I'm going to watch her die. I'm going to watch her die in front of me. And then they started just 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 stopped. 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'd drawn 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. 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. was known about fetal development. And there are charts that show this. Go like this.

Three weeks. The fetus's brain and heart begin to develop. Eight weeks nerve fibers. 13 to 16 weeks, the fetus begins to move and then kick. At 23 weeks, some fetuses respond to familiar sounds like a mother's voice. And at 24 weeks. Air 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 to. together between breaths. So that's a really important thing. So for a long time, the actual viability line, not the theoretical one, was 28 weeks. But then, in the late 70s, someone invented an artificial lung surfactant. It's kind of a slippery white stuff that they shoot down the ventilator tube and the baby's born. And that combined with IV nutrition, new super small ventilators, moved the line of viability back to around where it is now. Where it is now is, generally around 24, but here's the thing, depending on what hospital you're in, even what doctor is on call, sometimes it can be 23 or 25, or in some cases, 22.

So given modern technology, survive. 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. Yeah. 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 had 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, a doctor tells her that there's nothing more they can do. The baby is going to come in a day, maybe two. The guy comes in and he seems a little uncomfortable like this. It was not pleasant for him. He said, you know, your baby's probably coming in 24 to 48 hours, and we know how hard you work to have this baby, and we know how much you want this baby,

and we assume that you want everything done. What does that mean? And 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, a 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? 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, diseases have filed wrongful life suits, essentially claiming that they should have never been born. We had to really debate what was in her best interest. What would she want? I started to really struggle with whether I was being selfish, whether I had already pushed too far.

And this was like God or the universe pushing back. That we would end up losing our house. Our marriage might break up. We would lose our ability to try again for another child. I felt like I might get a baby, but I would lose everything else. And... I think I got pretty close to know. All night as we're talking this through

and crying and trying to figure it out, we could hear the baby's heartbeat through the monitor. Baby was letting us know all night, I'm right here. I'm right here. But there must have been a moment where you had to say yes, or no out loud. Well, we asked for second opinion, or not a second opinion, but another consult. We had some more questions.

And a nurse practitioner from the NICU came to the room. Yes, my name is Diane Loiselle. I'm a neonatal nurse practitioner. This is the next day. They had asked to speak to someone again. And instead of just citing numbers and statistics. I don't give numbers. It's different for each baby.

She kind of started to paint a picture. This is what I've seen. I've been doing this 30 years. But more importantly, I also told them that it wasn't a yes or no decision. She said, you know, you don't have to decide right now. They could have the baby. If the baby came out crying and active,

then we should do everything. We can. For the baby. But if the baby came out blue and limp. 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. OR 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? Well, I didn't see her then. I just saw like her kind of whizzed by in an incubator. And she just looked like a little dark smear in a hat. And did you make it to do? 24 weeks. So we were one day shy of 24.

23 weeks and six days. We'll be back in just a moment. Hey, I'm Chad Abumrod. I'm Robert Krollwich. This is Radio Lab. Today we're spending the entire hour on a single story, which we saw in the Tampa Bay Times. Kelly Benham, a journalist, published an unbelievably wonderful set of articles about her and her husband, Tom French, who 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 6 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.

And they incubator. For the first time. And she was, like, weirdly perfect. She had all the parts, these long fingers and long feet, delicate little nose. And she had hair and fingernails and eyebrows and, 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. with her that I was now that thought was filled me with a real dread and um I went up to see her I could see that she was only um 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 at already washed and sterilized my hands once and she had me do it again. She showed me how to reach in through this little round 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. 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 attempt 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. So 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 Hullet. 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 careful? 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 grasping the finger of a parent, it's actually a reflex. That the babies have a grasp reflex. I never tell a parent that because they think it's an intentional movement. Because, you know, putting yourself in the parent's head, if you've got to decide how much am I going to push, how much of my heart am I going to pour into this little creature, maybe if you can see something like will or something like intention, if you see, oh, that's a person in there. Or maybe if you don't see it, maybe it's the only way you've got to make this decision. 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 and five 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 was time. Yeah. So they decided, he and his wife, to let her go. Peacefully. But I went back into the NICU to see her. And something happened.

He looked down and he saw her lips move. Barely. She started sucking on a soother 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 Sioux 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 brain stem. It's not... 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 like what if she died like what would happen like would we have a funeral do they make caskets the 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, 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? Hmm. 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. 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, her.

About five days after she was born. No, in those five days, pretty much everything in their lives changed. I mean, on the most superficial level, they began their hospital stay day zero in the maternity ward, which had butterflies on the walls. Images of roses opening. And everyone's really good looking. Like in an ER sort of way? Like in a Grey's 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. Durstley 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? Right.

But there is something there that she responded to her. 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 in her blood. Ah. Tim says that number on the monitor was one of the only ways that they could get feedback about how she was doing because, you know, her eyes were still closed. There'd be 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 Haggard'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. And 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...

And when they get there, they were told... That she did it again. She got 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 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 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? It seems... 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 were 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 oar. 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 a 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. a slim chance. So they're wheeling the incubator with the baby in it. 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, you 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 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 i um 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 put her through 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 just kind of funny. Kind of stereotypically male of me. And Tom says they were in the car around the time of the surgery. As we're driving, you know, by that time, 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. She would never get to know. And I had this terrible thought that, you know, she was in this incubation. bait of 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. Neonatologist 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 stillbirth 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. 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 will 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 we might want to think about buying a car seat. That was the first inclination that we might be able to take her out of there. That's the first time I've ever imagined a choir of angels singing around mention of car 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, 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 down. 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. 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, what is, you know, 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, am I. This Junebug. Good morning, Junebug. That's Jennifer. Is Ms. Jennifer? Say hi. When we got there, she was still, she was.

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 still? Oh. Daddy. 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 Shisey dog Nice hug 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 You know what I thought 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 daycare. It was, it was, it was, it wasn'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 happening. I'm going to kiss you. Nothing you can do about it either. Are you ready?

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, both Tom and Kelly said, no way. And then Tom told us about these flu shots that Juniper gets. They're not just flu shots. They're like flu shots, like super flu shots. And there's four shots you get. And I swear to God, they cost 14,000. thousand dollars for those four shots. That's a real number, you just said?

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 we took her to visit a preschool the other day. And we took her there and set her down and she just took off and like went up to these giant children and started taking their toys and they were singing the wheels on the bus and you could see it in her eyes. I know that song. and she didn't care about Tom or I one bit. You know, she was totally there with those kids, and she was so ready. And I thought, wow, she might be okay.

She is okay. In case you're wondering, Keith Barrington, the neonatologist we spoke to earlier, when we asked him how his daughter is doing? Out of curiosity, how is Violet doing now? She's great. She's 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 re-listened to this, I wondered, like, how's 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 famous? Well, probably. Maybe. Her dad, Tom, and her little sister, brought her over to a studio in Indiana near where they live to chat with our producer, Anisa, and I.

Yeah, hi. Hi. Well, thanks for talking to us. Of course. Yeah. How's your day going? It's going good. I got picked up during math,

so I'm very happy about that. You got picked up during math? Yeah. We weren't really doing 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're behind me or they're going to a different high school, so I'm not excited about that.

Juniper says school hasn't been a very easy place for her. Yeah. Kindergarten school, eighth grade. Didn't really go as fast as I would want it to. I was just super lonely. I mean, it's kind of hard for me to make friends. And some of that, she says, had to do with what she went through as a baby. I mean, I'm super small.

Some kids tease me about it. Like, I'm taller than you, and, you know, you're two years older than me and stuff. But, I mean, look at small and bars. You know, she's super tiny. You look at the stuff she can do. And besides being smaller than the other kids in her class, Juniper says the only other physical thing that she has to deal with is a kidney condition. I mean, I love salt, but I can't eat too much of it.

And that really annoys me. What's actually been harder is the emotional side of things. I have to deal with PTSD, even though I was so small. I can't really remember. But, you know, it's still a little bit. 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, you know. I don't really think about how being a microprimey has really affected my life. You know, I just live my life like a normal human being,

and I don't really think, oh, yeah, I have this crazy story to tell. And, you know, I was born, blah, blah, blah, this early. So what does your life look like, 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. Storm Creek Ranch, which is 30 minutes away 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 learn how to be calm. You know, it makes me let go of all my anger.

And I can just be free. I mean, just glide. And working with the horses has helped Juniper make a lot of people friends, too. There's Natasha, I call her auntie. A bunch at the ranch. My instructor Jan. They're like a second family. And also at school.

Yeah. I spend most of my time with my two best friends, Mina and Katie. We just have fun. I'm really proud of how far I've come. You know, I went from, you know, having no friends being super lonely to having all these bunches of friends and best friends, you know, and I'm really proud. Then I can be myself with them, you know. I mean, it's really special. And, I mean, my mom, you know, she described how she wanted her daughter to be.

And, you know, the person she described is me, you know. I'm loud. I ride horses. I love this thing at the top of my lungs, but I sound terrible. That is me. Yeah. Yeah. 23 weeks, six days was produced by Jad Abimrod and Matt Kielty.

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 RadioLab.org and on our Instagram at Radio Lab.

Thanks for listening. We'll see you next week. Hi, I'm John Quill, and I'm from Brooklyn. and here are the staff credits. Radio Lab is hosted by Lulu Miller and Latif Nassah. Sorin Wheeler is our executive editor. Sarah Sandbach is our executive director. Our managing editor is Pat Walters.

Dylan Keefe is our director of sound design. Our staff includes Jeremy Bloom, W. Harry Fortuna, David Gable, Maria Paz Gutierrez, Sindhu Nianem San Bandan, Matt Kielty, Mona Mad Gowker, Annie McEwan, Alex Nissen, Sarakari, Natalia Ramirez, Joanna Strogatz, Aniza Vizza, Ariant Wack, Molly Webster, and Jessica Young,

with help from Gabi Santos and Maya Appleby Malamid. Our fact checkers are Nora Belvidia, Hillary Elkins, Rachel Gross, Diane Kelly, Emily Krieger, Natalie Middleton, and Sophie Samayi. Hi, I'm Aubrey, calling from Salt Lake City, Utah. Leadership support for Radio Lab's science programming is provided by the Simon Foundation and the John Templeton Foundation. Foundational support for Radio Lab was provided by the Alfred P. Sloan Foundation.