23 Weeks 6 Days

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That's lab 283-763. Thank you. Enjoy the show. Hey, this is Raina Lab, I'm Matt Walters, one of the editors here. And this episode we're about to play is, well, it started as a newspaper story that a friend

of mine and actually one of my first editors in journalism wrote way back in 2012 for the Tampa Bay Times. And when I read it, it just destroyed me. And I sent it to Chad and I was like, you got to interview Kelly about this story. And he did, and the episode it became is still one of my favorite episodes of the show ever.

“And when we started talking about playing it again, I wondered, how's everybody doing now?”

All these years later. So I checked in, I really didn't know what to expect. And what we found was very moving. That's at the end. I hope you stick around and listen to it.

But first, here's the original episode, 23 weeks, six days. Wait, wait, you're listening to radio lab. Radio. From ringing. WNYS.

Three, two, one. Kelly, can you hear me? Yeah. Okay, good. I'm 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, I'm Ron. I'm Robert Crowwich. This is Radio Lab, and today, a story about a decision.

About a decision that we, as human beings, we've only recently begun to consider. Yeah. Sure, there are stories like this elsewhere, but somehow. Not at all too many.

Yeah, maybe not. So we're going to devote the entire hour to just this one story.

“Which I think is the first for us, I think it is.”

And the story comes to us from a woman named Kelly Benham. Okay. She's a reporter for the Tampa Bay Times in Florida. Maybe the way to do this is chronologically, just sort of across time.

Where were you, and who-- what did you want to do? When I decided to have a baby? Yeah. Were you one of those people who-- Ever since her young, you knew that you would be a mom?

Yeah, I did. But 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 to one very badly.

“But I just couldn't see how it made sense”

from 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 and the world tour on the cruise ship where you get to be the poker master, whatever you think of, the only world tour

I would have been in, she was spring-steen. Spring, the fallen spring-steen around Europe. I'd made up my mind. No more kids. But she was insistent.

No, 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? I was brutal, broke up. And when 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 wasn't 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.

I had anything new, 'cause I had,

“you know, I usually check out their gargoyles”

and their stuff. And so I just was kind of walking through the section of browsing and then something just stopped me in my tracks. Apparently it was really like, kind of a lightning bolt epiphany.

And I just, so wait a minute. Maybe you are not thinking about this straight. Your acting is though you're 80. And then it hit me that nobody knows how much time they have. To have a child is to embrace a future

that you can't control. Remember those words. So I, you know, I had this come to Jesus meeting with myself among the gargoyles. And that was when I realized

I needed to just take a step back and try to restart the conversation with Kelly. And so then he went home and wrote me this long letter and I just, I was over him by that point. I was like, I wasn't looking back.

So over a few months. Took a little while. They patch 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 made you drop a bunch of eggs at one time after that, the turkey based or method. There's like kind of a process that they walk you through.

After turkey based or IVF. Test tube stuff.

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, we can try it with an egg dollar. Meaning, you get a friend who'd be willing to donate the egg, take the egg, put it in the dish,

forcefully, and pregnant it with Tom's sperm, then you insert the egg into your womb. And that's kind of the magic bullet. It seems infertility. 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've been planted the egg. And shortly after she took a pregnancy test. I tested a way too early.

So the line was super, super faint. Wasn't even sure I could see it at all. So I took a photograph of the pregnancy test. And I put it into Photoshop. And I actually had to dial up the contrast

to make the line up here. [LAUGHTER]

“That is everything about this is so high-tech, right?”

Why? And what did you see what you wanted to see? Yeah, and I was like, oh my god, I think there's two lines there.

So I waited, and I did it a second time.

And then I told Tom, and did you go into the expected parent mode? Oh, yeah, I touched up the paint. You know, I patched the little holes in the wall. Um, everything was perfect.

Everything was absolutely perfect until it wasn't. Five months into her pregnancy, 20 weeks, which is just about halfway, because the full-term is 40. Kelly was at a park playing with her dog. And I just, I felt a little bit weird and just started to bleed.

Like, not a lot. But any amount of blood is not a good thing. And I called the doctor, his office, and they didn't seem too concerned. They were like, yeah, you probably want to go to the hospital

and get that checked. And I went to pick her up, and by the time we got to the hospital, she was in a lot of pain. cramping, cramping, cramping. I knew something was really, really wrong.

They got me into one of those wheelchairs, and they wheeled me into the sort of triage room. And by that point, like, blood was just coming out of me. Chunks of blood coming out of me. And I didn't know.

I thought it was baby parts, like falling out. And I thought, I'm having a miscarriage. Like, the baby's going to drop out on the floor. I was throwing up. And then the doctor came in and he looked scared.

- Does the doctor say something or what 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's ever grabbed my arm.

“And I remember just asking him, don't let me die.”

- Please don't let me die. It was terrifying. - And then at some point, they brought in an ultrasound machine to see what was going on with the baby. And I assumed the baby was long dead.

I mean, I thought there were baby parts on the floor. I didn't know. And they hooked up this machine and they were moving around and around and trying to pick up heartbeat

and there was nothing. And I was apologizing to Tom, I'm sorry, like, you know,

Then all of a sudden,

there it was, just this heartbeat.

- This is sound she recorded on her cell phone. - Baby's heart's beat is super, super fast. - So it sounds like a rabbit or something. - You just hear it on the sound of her? - 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 gonna watch her die.

I'm gonna watch her die in front of me. And then they started just pumping me full of drugs to try to get this slayer 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 stopped. They got the bleeding stopped.

They put me in a hospital room.

And they said, get to 24 weeks. 'Cause 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 Rovey Wade.

- In Sandra's birth to state, for example, the court ruled that a woman could commence in abortion on herself is guilty of no crime again. - Okay, so here's the story as I understand it, Robert. - Okay.

- In Rovey Wade, the Supreme Court was trying to strike this balance. They wanted to protect a woman's rights to choose, as we know. But they also wanted to say that there are limits

to that right, that there is some moment in the development of the fetus and the course of this pregnancy. Where you cross this line and suddenly it's no longer just about the woman's rights.

Now you have to think about the state's interest in the unborn child.

“- The problem, of course, is where do you draw that line?”

- Not that, not that is the million dollar question.

- This is need of Hermione. She's a law professor at Duke University. So the kind of best guess at that point, the best medical objective standard that the justice could come up with.

- And this is in 1973. - Was viability. - And they were 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 of fetus is quote viable. So then the question was, when does a fetus cross that line? When can it survive on its own? - Well, we began the justice in our race with the development of the human embryo.

- And here's where you get to the 24-week thing. What ended up happening was the court considered what was known about fetal development. And there are charts that show this. They go like this three weeks.

- The fetus is 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 'cause 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 in the baby's born. - And that combined with IV nutrition.

- New super small ventilators. - Moved the line of viability back to around where it is now. - Where it is now is generally around 24,

“but here's the thing, depending on what hospital you're in,”

even what doctor is on call, sometimes it can be 23 or 25. Or in some cases, 22. - So given modern technology. - You could imagine, so it's needed one day,

the line could jump away back, which will make things really tricky.

where modern scientists are able to develop

an artificial lung. - Yeah.

“- Disbiability started at the point of a fertilized egg.”

So 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,

'cause that's the limit. - Which meant that the doctors had the pump Kelly full of drugs. Keep her feet elevated for at least another four weeks. - But I just kept going into labor

in and out of it and they felt like they couldn't hold it off anymore. - And at 23 weeks and four days, a doctor tells her that there's nothing more they can do, the baby is gonna come in a day, maybe two.

- The guy comes in and he seems a little uncomfortable. Like this, it was not pleasant for him. He said, you know, your baby is probably coming into 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.

My thought, 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, he pulls 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 didn't 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 know? - Just let nature take its course. - And he said it would be, we should decide before the baby came because once the baby came, if we saw the baby,

it would be really hard to say no. So if, if no was gonna be the answer, we needed to say that before the baby came. - That was the worst night ever. Yeah, you're trying to make up your mind

about what's right. Like what we'd 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 to fax 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 went into 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 no. - 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." - And they must have been a moment where you had to say,

"Yes, or no, I'll loud."

- Well, we asked for second opinion, or not a second opinion,

but another console. We had some more questions. And a nurse practitioner from the NICU came to the room. - Yes, my name is Diane Loisell. I'm a neonatal nurse practitioner.

- This is the next day. - Hey, head asked to speak to someone again. - And instead of just citing numbers and statistics. - I don't give numbers 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, oh yes, or no, decision.

- They could have the baby.

- The baby came out crying and active. Then we should do everything. - We can't. - For the baby.

“- But if the baby came out blue and limp.”

- Interventricular 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 and tell the dies.

But you can give your baby a chance and see how it goes. - In other words, in a very real way, they could give this decision to the baby. - That same night. I was feeling like just uncomfortable.

- A couple hours later, discomfort turns the pain.

Finally, a doctor came in and was like, yeah, here in labor.

We have to go right now. So then it was like super, super quick. Oh, our light shot in the spine, cutting me open. And then... Oh my god, there's a third person in this room.

But not really, not quite almost. I mean, she was so, so early. - What did she look like? - Well, I didn't see her then.

“I just saw her kind of whiz by in an incubator.”

And she just saw my 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.

- I haven't seen my son since 2012. - This is Deborah Tice. The disappearance of her son, Austin, is one of the biggest missing person cases in the world. - What do you want from me?

- I should solve the mystery. - I know that my son is somewhere alive. - Listen to where is Austin Tice, from MPR's embedded and BBC Radio 4. On the MPR app or wherever you get your podcasts.

- Hey, I'm Chad Abumran. - I'm Robert Crowley which 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's 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 gonna intervene.

If a baby is born after 25 weeks, there've been all kinds of studies which show that doctors then feel morally obliged to save that life, no matter what the parents say. So before 22 and after 25, things are pretty clear.

But between 22 and 25, you land in this 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 gonna stay or whether it's gonna go.

- So they delivered by C-section and their daughter, with that point, didn't have a name, was whisked off to the neonatal intensive care unit or the NICU, and eventually they went to see her. - And they incubator?

- For the first time. - And she was like, weirdly perfect. She had all of the parts, these long fingers, and long feet, delicate little nose, and she had hair, and fingernails, and eyebrows,

and all the things that they're supposed to have, 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.

Like I didn't know how it was to feel.

I mean, you wanna believe that the minute you meet your daughter, there's gonna be like, butterflies, you know, or like unicorns, supposed to be the best moment in your life, but there was so much terror inside that moment.

- I was terrified because I love being a father.

“My relationship with my sons is extremely important to me.”

And I was really terrified that she would be so alien having been born at 23 weeks, six days, that I wouldn't recognize her as my daughter, and that I wouldn't bond with her. That thought was filled me with a real dread.

And I went up to see her. I could see that she was only half finished

barely a pound at that point.

So tiny, my brain couldn't even process how small she was. And the nurse Gwen, she said, well, you can touch her, you know. And I was stunned because I didn't think I would be able to. And so she had me had 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 portal into the incubator. And explain 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 I, what got to me was how I could be so afraid

when she was so strong. And at that point, I, I just, she was the most beautiful thing I'd ever seen. And I told her, "Hey, Pina, it's Daddy." So that's when I met my daughter.

Now, when a baby is this early, the parents and the doctors are watching it very carefully.

“Trying to guess, is this baby ready to be out in the world?”

Is it gonna make it? And Tom says when she grabbed his finger, that wasn't just them bonding. And Keith 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 Tempty Cloud 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 the analyst, again, the nearest practitioner. After meeting the baby, that this one looks very fragile, or this one can do it. The baby is declared itself. Now, there's a real question as to like, "What does that mean?

What do you see when something that premature declare 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? Can a kid?

I think you can see for some fight. I call it "spunk" a lot of times. That is Tracy Hullett. Registered nurse. She was Kelly in Tom's primary nurse.

That 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. It's 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, "flight, spunk."”

May just boil down the physiology. Maybe that baby had a few more lung buds to start with. Maybe it hadn't 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 grasped reflex.

Because you know, putting yourself in a parent's head,

if you've got to decide, how much am I going to push? How much of my heart am I going to pour into this little creature? Maybe if you can see something like will or something like intention. If you see, if 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.”

That's my wife. The professional ethicist often says, "We don't make important decisions in our life for rational reasons." Very often. Keith and his wife, Annie John VA, have done a huge amount of research

into the ethics of extremely premature births.

But one of the primary reasons we wanted to talk to him is that in addition to being a neonatologist and a guy who publishes a lot of stuff in this area, he and his wife recently had a baby girl who was born at 24 weeks and five days. She weighed 720 grams, one and a half pounds. And she was actually in my own, and I see you.

Oh wow. I was actually the director of the unit where she was. So he was in his unit. 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. So they decided he and his wife to let her go peacefully. But I went back into the NICU to see her.

In something happened, he looked down, and he saw her lips move. Barely. She started sucking on the tooth of the net and putting 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 is sucking on the tooth. Changed his mind completely. I went back to Annie and said, he can't stop. I really need to continue and give her the chance. But you knew that the sucking responses are not. That's a fairly deep brain.

Yes, it's a very basic. It's just the brain stem. You need a lot more than be able to suck to do well. But as I say, it was trying to be the parent there, not the NICU.

“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 been more evidence-based and rational and scientific, I could have gone either way. But just as a father, I couldn't do that point. Let's go. I just didn't really know how to process it.

I felt like she was, I just had this very acute sense that she had just been violently ripped out of my body. And I could feel where they had cut her out. And I just wanted to put her back and make her safe. And I had all these questions going through my head. How long did she have to live for us to get a birth certificate for this to be real? I felt like she might die and wouldn't count.

And I wouldn't be a mother, you know what I mean? And what if she died? What would happen? What do we have a funeral? Do they make caskets a size of shoe boxes? I mean, all these, like, it's so screwed up that that's the stuff you think about. But your brain goes places you just can't control or predict.

“And if she, I wondered if she knew, was she really aware that I was even standing there?”

Like, was it just a reflex that made her grab my finger? And when she grabbed it, did she know that she knew 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 if she's scared? I'll she could really do at that point, was sit with those questions.

And they just became this waiting game. *sad music* We'll continue in a moment. *sad music*

This is Deborah Tyson. The disappearance of her son, Austin,

is one of the biggest missing person cases in the world. What do you want from me? I should solve the mystery. I know that my son is somewhere alive. Listen to where is Austin Tyson, from MPRs embedded, and BBC Radio 4. On the MPR app, or wherever you get your podcasts.

Hey, I'm Jed Abelman, right? I am Robert Crowwich. 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. Well, here's the reason we wanted to.

“When did you decide to name your daughter, Juniper?”

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. And the maternity ward, which had butterflies on the walls. And images of roses opening. And everyone's really good looking. Like in a PR sort of way, or--

Like in a crazy anatomy, kind of way. We had one super hot nurse, we called her cupcake. And she had this glossy hair. You know, people would visit me and they'd be like, hey, it's cupcake here. When does cupcake come on by?

And-- 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 back. And everyone's wearing a uniform. I don't know who anyone is. And everything's like beeping and humming. And--

[sighs] And you don't know how long you're going to be there. And you don't have any sense of time. Like day and night don't mean anything. And, you know, we're sort of dimly aware of the sun rising

and setting out the window. But other than that, it's just, it's just like minute to minute, hour to hour. You're afraid to leave even for, even for an hour to get so much because the baby could die.

“You know, if we went home to get some sleep, would she?”

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 dunk. And she just had this little straw sticking out of her belly. And then they couldn't maintain her blood pressure.

So I was thinking of everything I could do. Because you don't want to feel powerless in a situation like that. You want to feel like there's something you can do. So, in quiet moments, what Tom would do? Chapter one, the boy who lived.

Is he would stand over Juniper's incubator? And he would read her Harry Potter. Mr. and Mrs. Dursley have number four, "Private Drive." We're proud to say that they were perfectly normal. Thank you very much.

They were the last people you'd expect to be involved in anything strange or mysterious. As I started reading to her, and as the days went on, She has no idea what I'm reading, right? But there is something there that she responded to. I wanted to say she liked because her sat number would go high at that point.

Her sat number, what is it like her oxygen? The saturation of oxygen in her blood. Tom says that number on the monitor was one of the only ways that they could get feedback about how she was doing, because, you know, her eyes were still closed. There would be times when she wasn't moving around a lot. The higher the number, the better.

And he says, "When he would read 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 the larger just going off the guy.

“And Kelly hit me and she said, "You're scaring the baby."”

And I'm like, "What? You could see even before her eyes opened. That she was really responding to what we were doing." She didn't know what a chapter is, but she was in her own way very eagerly waiting for the next chapter. And I don't know a better way to describe one to be alive than you want to find out what happens next. Unfortunately, what happens next is that one night at around 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 when they get there, they were told... That she did it again. She got another hole. Another hole or a test-ins.

And she started to really spiral. They'd really go downhill. Her blood pressure and oxygen levels were crashing. She was on 100% oxygen. The ventilator settings were turned up as high as they could go. And she was still struggling and faltering. And you know, once they are giving her baby a 100% oxygen, they can't give her any more.

“At that point, that doesn't everything that I could possibly do.”

This is Valzea Shaquille. Neonatologist at all, Trudeau's hospital. She was June the first doctor at the time. She says she'd given June 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. Tatably wrong.

We might lose her at any second.

The only option left to take her to the operating room with car open. Clear the intestines, relieve the pressure. How do you do a surgery on a one pound baby? Seems so 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. At that point, I was at bedside looking at her. Trying to figure out what to do.

And all of a sudden. She opened her eyes. Really? Yeah. She opened her eyes.

Why? And she looked at us. Her eyes were like wide open. And she was looking right at the doctor directly. Steering 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 are totally unresponsive because they're just fighting for every breath. And the ability to just open her eyes at that stage in her life. When she had no blood pressure that I could barely record. When she had hardly any oxygen. For her to just open her eyes and look at us.

It was a very powerful statement that I'm still here. I'm 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 it's a it's futile. And it's she her blood pressure is so unstable.

That she will not make it out of the OR. In the surgeon told her even if I can open her up and do the job. Her skin is so papery that I might not be able to soar back up. There are guidelines that medical industries have. Even basic things like the Hippocratic oath that do no harm.

That's law professor and ethicist need to fair a honey 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's life there's hope. So this is our window we should do it now.

For Dr. Shaquille the argument that ultimately won the day was simply this. Basically what I told her was that if you think she's going to die. 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 willing to think you better with the baby in it.

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 didn't know I gave her a little kiss on her forehead and topped it the same day and then they wheeled her away. How long was the operation? It was. They they called they page just much more quickly than we expected to come back.

So we knew something was wrong. The nurse ushered Tom and Kelly into a separate room. She was a little windowless conference room and the surgeon came in and she said, you know, I was supposed to go in and clean everything out and rinse everything off and find the whole and patch it and do all these things.

And she said when she cut the baby open and touched the babies and testants with her little probe.

She's the way she described it was everything fell apart. It was just falling apart and falling apart. And you're hearing? Yeah. Juniper had survived the operation.

But barely. So we're thinking like, okay, this was an incredibly risky surgery. And we just flew through it for nothing. And I thought there was no way the baby was going to lift the morning. I've been really working hard to avoid thinking about all the bad things that were.

Possibly going to happen here and just trying to hold on, you know, and I sort of thought with my job to do that. And I'm just kind of funny. Kind of stereotypically male of me. And in Tom says they were in the car around the time of the surgery.

As we're driving, you know, by that time Juniper and I were about 2/3 of the way to the first book.

“And this thought just snuck in on me, which was, what if I don't get to finish reading her this book?”

What if she doesn't get to hear the ending?

And, you know, she never finds out, you know, what happens to Harry and Hermione and Ron?

That thought laid in all the other thoughts. Very difficult thoughts about all the things we wouldn't get to do with her. She would never get to know. And I had this terrible thought that, you know, she was in this incubator. This is Isolab, this plastic box.

And I had this terrible thought that she was just going to go for 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 of Kellyanite, which is that only one of us got to lose it at a time.

“And, you know, that was my turn to lose it.”

We're in a very unnatural situation of neonatal intensive care, which is so recent in the developed world, and still doesn't exist in much of the world. And working so hard to save babies is very new. Neunital, it's just Keith Bergton. In evolutionary history, newborn babies very frequently died.

And most parents who have any significant number of children had lost one or two or three or more. And in order to be able to carry on with your life and to provide for the rest of your family, we had to be able to adapt to the death of babies. And now that it's become much less common to lose a baby, even, you know, miscarriages and stillbirths.

So now we're realizing how much that hurts and in the past maybe we've hidden some of that from ourselves. No way the baby was going to live so long. But what happened was really strange. She continued to just not die. And the next day, she, you know, she was still there.

The surgeon was surprised and no one could quite explain it. The more I thought about it, the more I found it like surprising and interesting. You know, because she doesn't know that there's a better place. You know, that she's just in this box. And she's got needles coming out of every which way.

And tube donor 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?

After the surgery, things did not get easier.

“She would stop breathing many times a day.”

Teams would rush into her. Come on, Jim, come back, come back. I just remember the room was 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 Hullett again, primary nurse. They get sick.

And we just, it's a superstition, obviously, but something happens. And sometimes it can be devastating. So what do you say instead?

We would say that place that the baby's going to go when they leave here.

Well, I got lots of tortured. Sometimes we spell it, which makes no sense at all. But after about four and a half months, Diane and nurse practitioner told us that we might want to think about buying a car seat. That was the first inclination that we might be able to take her out of there.

That's the first time I've ever imagined a choir of angels singing around mention of car 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.

And finally, the doctor gave the all clear, and we took the monitor 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 this one.

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 take a play. That was totally before the gay thing, and before I stopped going to take a play.

“And all in all, how long were you in the hospital for six and a half months?”

Who's 196 days? How is you to pronounce? What is, can you give us a snapshot of her morning? Sure. Actually Tom and Kelly were nice enough to allow us to send a reporter to their house.

To meet her. Good morning. She's two years old, pal. Good morning, pal. Good morning, too, bud.

That's Jennifer. Isn't this too bright? Say hi. When we got there, she was still, she was still in bed. It was just waking up.

She's not being really close to this morning. She's not being really close to this morning. She's not being really close to this morning. She's not being really close to this morning. But then she just sprung up, jumped out of bed, and took off.

Oh, we're still walking. Dad is. Yeah, even the daddy. Jesus. Isn't that funny?

Jesus. I do. He has. Really? Come on.

Show me where the kid is. Oh. Oh, baby. Oh, baby. I know you want to give the kid a hug.

She's easy. Oh. She's kind of your typical two-year-old.

“And because we were there, Jennifer felt it was kind of important.”

We can see some tricks she's learned. Oh, oh, oh, oh. Yay. Perfect. Yeah.

We've never saw this. No, I don't know. This is radio. So they have no idea what you just did. Good.

Some results. You know, it's interesting because as journalists, again, we spend a lot of time on chronicling, sometimes very terrible things. And what's interesting is that yesterday morning, by journalists, standards, nothing happened.

You know what we need to do is change your diaper.

It was. It was.

Wouldn't even be on journalistic radar.

Oh, oh, oh. But what you know is apparent.

“Especially after you've been through what we went through.”

What did you see, mom? I won't kiss you. It was. Everything happened. I won't kiss you.

Nothing can do about it either. Are you ready? What? Everything happened yesterday. And those couple hours.

The entire world was contained inside that morning. Can I have us come on kisses? And all of her.

All the blank chapters of her life were inside that morning.

Waiting to be written. Which point you went this book? 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 for those four shots. And that is that's a real number, you just said. That's a fact. That's a fact.

They are designed to help protect her from RSV. Which is a virus that, in most people, just presents 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 were 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 sat 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 arise. I know that song. And she didn't care about Tom or I won, but, 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 new neurologist we spoke to earlier, when we asked him how his daughter is doing. I'd agree with her.

So how is how is Vielette doing now? She's great.

She's coming to the end of a first grade in school and she's, uh,

I should say, I know, she's perfect. So we should say, these are two stories of babies who made it. But in this brand new frontier, of course, there are many stories of babies who don't. So pat here again. Uh, that was 2013.

It's 2026 now. And re-listen to this. I wondered the cows' juniper doing now. So I texted her mom, Kelly.

“And she wrote right back and said, you should ask her.”

Is she going to do this? Well, probably. Her dad, Tom and her little sister, wrote 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, how's your day going? It's gone good.

Um, I got picked up during math. So I'm very happy about that. You got picked up during math? Yeah, we, we weren't only doing math. We got you out of school.

Yeah. So Juniper is 15 years old now. And when we called her, she was about to finish 8th grade. So you're going to high school next year? Yeah.

Oh my god. Are you excited? Um, in between, I'm nervous. Uh, but excited at the same time. Excited for new fans and a new school and new classes.

But I'm also, uh, uh, nervous to leave my fans that are, you behind me or they're going to different high school. So I'm not excited about that. Juniper says school hasn't been a very easy place for. Yeah.

Can they go out and school? It's great. Didn't really go as fast as I would want to do. Um, I was just super lonely. I mean, I'm, I'm, I'm, it's kind of helped 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.

But I mean, look at small 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, um, even though I'm so small. I can't really remember, but, you know, it's still affected me in a lot of ways.

She's struggled with anxiety, controlling her emotions. But the thing is, I don't, I don't really think about it a lot.

You know, I don't only think about how being a micropremise really affected my life.

You know, I just live my life like a normal human being. And I don't want to think, oh, yeah, I have this crazy story to tell. And, you know, I was born to love, love, love, love this healing.

“So what does your life look like, um, like outside of school?”

Like, what are you, what are you most into? Horses, horses, horses, horses, horses. So Juniper says a few years ago, her mom started taking her to this barn. A strong, quick glance, which is still even in its way from our house. And I fell in love.

I feel like the horse, for me, is like a best friend. It teaches people, especially me, how to control my emotions, because when you all angry, oh, my heart of frustrated,

then that inflicts on them.

And so they act out, they lash out. So I have to learn how to become. You know, it makes me let go of all my anger. And I can just be free. I mean, just be allied.

And working with the horses has helped Juniper make a lot of people friends, too. There was Natasha, a color anti. 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 hubris, friends, meaning 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, having all these fun shows of friends. And best friends, you know, and I'm really proud. And I can be myself with them, you know. I mean, it's really special. And I mean, my mom, she described how she wanted her daughter to be.

And, you know, the person she described me, you know, I'm loud. And I like voices. I love just things I would talk for my lungs, but I sound terrible. That, that is me. Yeah. 23 weeks, six days was produced by John Abramrod and Matkilti. And the update was produced by Anisa Vita.

“Kelly and Tom Rudo 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 radioab.org and on our Instagram @radioab. Thanks for listening. We'll see you next week. Hi, I'm John Cole and I'm from Brooklyn. And here's the staff credits.

Radioab is hosted by Lulu Miller and Latif Nasa. Siren Wheeler is our Executive Editor. Sarah Sandbach is our Executive Director. Our Managing Editor is Pat Walters. Dylan Keith is our Director of Sound Design.

Our staff includes Jeremy Bloom, W Harry Fortune, David Gable, Maria Pasco-Tieris, Sindhu Nyanam Sambandan, Mackility, Mona Madgalka, Annie McEwen, Alex Neeson, Sarah Curry, Natali Romeras, Joanna Strogats, Anisa Vita,

Aria Wack, Molly Webster, and Jessica Young, with help from Gabby Santos and Maya Apobi-Malamid. Our fact checkers on Nora Belblidia, 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 Radioab Science Programming is provided by the Simon Foundation and the John Templeton Foundation. Foundation of Support for Radioab was provided by the Alfred P. Sloan Foundation.