[RADIOLAB INTRO]

ROBERT KRULWICH: Kelley, can you hear me?

KELLEY BENHAM: Yeah.

ROBERT: Okay, good. All right, so we're just doing this because ...

JAD ABUMRAD: Because that article of yours ...

ROBERT: That was so beautiful.

JAD: One of the most amazing things we've ever read.

KELLEY BENHAM: Oh, thank you.

JAD: Okay. I'm Jad Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: This is Radiolab, and today a story about a decision.

ROBERT: About a decision that we as human beings, we've only recently begun to consider.

ROBERT: Yeah, sure there are stories like this elsewhere, but somehow ...

KELLEY BENHAM: Not too many.

ROBERT: Yeah, maybe not.

JAD: So we're gonna devote the entire hour to just this one story, which I think is a first for us.

ROBERT: I think it is. And the story comes to us from a woman named Kelley Benham.

KELLEY BENHAM: Okay.

ROBERT: She's a reporter for the Tampa Bay Times in Florida.

ROBERT: Maybe the way to do this chronologically, just sort of across time. Where were you and who—what did you want to do?

KELLEY BENHAM: When I decided to have a baby?

ROBERT: Yeah.

JAD: Were you one of those people who ever since you were young, you knew that you would be a mom?

KELLEY BENHAM: 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.

JAD: Hmm. And a daughter and not a son.

KELLEY BENHAM: 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.

JAD: And what was the image?

KELLEY BENHAM: Like really feisty, mischievous, dark hair, dirty face. [laughs]

JAD: Okay. We've left princess land now.

KELLEY BENHAM: Not a princess at all. A tree climber and a dog chaser. I really wanted to have a baby. I wanted one very badly.

TOM FRENCH: But I just couldn't see how it made sense for me to be the father.

JAD: That's Tom French, also a journalist at the Tampa Bay Times—or he was at the time. He and Kelley had been dating for a few years, but he was a good 10 years older than her.

TOM FRENCH: I had two kids.

JAD: Sons.

TOM FRENCH: Approaching the end of college. And I was ready to travel. I wanted to see Spain and Greece and ...

ROBERT: The world tour on the cruise ship where you get to be the, you know, poker master, whatever you ...

TOM FRENCH: No, the only world tour I would have been into was Springsteen.

JAD: Springsteen.

TOM FRENCH: Following Springsteen around Europe. I'd made up my mind.

JAD: No more kids.

TOM FRENCH: But she was insistent.

KELLEY BENHAM: I stuck to it.

TOM FRENCH: She saw our daughter very clearly.

KELLEY BENHAM: Oh yeah.

TOM FRENCH: And saw that I was destined to be that little girl's father.

JAD: And was that a happy gentle disagreement or the other kind?

KELLEY BENHAM: 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.

TOM FRENCH: The line was the mailboxes.

JAD: There really was a line. Wow. Yeah.

KELLEY BENHAM: It was a horrible time. We call it the dark era.

TOM FRENCH: The dark period.

ROBERT: What turned you?

TOM FRENCH: It was the Halloween section of Target. My sons and I have loved Halloween forever. I loved it when I was a little kid and I just wanted to see what they have, if they had anything new because I had—you know, I usually check out their gargoyles and their stuff. And so I just was kind of walking through the section browsing and then something just stop me in my tracks.

KELLEY BENHAM: Apparently it was—it was really like kind of a lightning bolt epiphany.

TOM FRENCH: And I just said, "Wait a minute, maybe you are not thinking about the 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.

JAD: Remember those words.

TOM FRENCH: So I had this come-to-Jesus meeting with myself among the gargoyles, and that was when I realized I need to just take a step back and try to restart the conversation with Kelley.

KELLEY BENHAM: 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 ...

TOM FRENCH: Took a little while.

JAD: They patched things up, eventually got married and started trying to make a baby.

KELLEY BENHAM: We thought that this would just happen right away. And then of course it didn't.

JAD: After trying and trying ...

KELLEY BENHAM: The regular way.

JAD: She took ...

KELLEY BENHAM: Drugs that make you drop a bunch of eggs at one time.

JAD: After that ...

KELLEY BENHAM: The turkey baster method. There's like kind of a process that they walk you through.

JAD: After turkey baster ...

KELLEY BENHAM: IVF.

ROBERT: Test tube stuff.

KELLEY BENHAM: Yeah. And I never thought that it would get that far.

JAD: But it would go farther because after trying IVF ...

KELLEY BENHAM: Three times.

JAD: That didn't work.

KELLEY BENHAM: So they said, "Well, you can try it with an egg donor."

ROBERT: Meaning you get a friend who'd be willing to donate the egg. Take the egg, put it in the dish, forcibly impregnate it with Tom's sperm, then you insert the egg into your womb.

KELLEY BENHAM: 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.

JAD: Kelley asked a good friend to be an egg donor. They implanted the egg, and shortly after she took a pregnancy test.

KELLEY BENHAM: I tested away too early. And so the line was super, super faint. Wasn't even sure I could see it at all. So I took a photograph of the pregnancy test and I put it into Photoshop, and I actually had to dial up the contrast to make the line appear.

JAD: [laughs] That is—everything about this is so high tech.

KELLEY BENHAM: Right?

ROBERT: Wow. And what\—did you see what you wanted to see?

KELLEY BENHAM: Yeah, and I was like, "Oh my God I think there's two lines there." So I waited and I—and I did it a second time, and then I—then I told Tom.

JAD: And did you go into, like, the expectant parent mode and ...

KELLEY BENHAM: Oh yeah. You touched up the paint. You know, I patched the little holes in the wall. Everything was perfect. Everything was absolutely perfect until it wasn't.

JAD: Five months into her pregnancy, 20 weeks, which is just about halfway, because a full term is 40, Kelley was at a park playing with her dog.

KELLEY BENHAM: 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'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.

TOM FRENCH: And I went to pick her up, and by the time we got to the hospital, she was in a lot of pain.

KELLEY BENHAM: 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 gonna drop out on the floor. I was throwing up, and then the doctor came in and he looked scared.

ROBERT: Does the doctor say something, or what happened?

TOM FRENCH: The doctor explained to me quietly there was something that was making it difficult to stop Kelley's bleeding. And if they couldn't stop it, we might lose Kelley. And Kelley heard the doctor say this—and I need to tell you, Kelley is the toughest, most fearless person I've ever known. But she grabbed my arm as hard as anyone who's ever grabbed my arm.

KELLEY BENHAM: And I remember just asking him, "Don't let me die."

TOM FRENCH: Please don't let me die. It was terrifying.

KELLEY BENHAM: And then at some point they—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 wand around and around and trying to pick up a 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 ...

[ARCHIVE CLIP: Heartbeat]

KELLEY BENHAM: ... there it was, just this heart beat.

JAD: This is sound she recorded on her cell phone.

KELLEY BENHAM: Babies' hearts beat super, super fast, so it sounds like a rabbit or something.

JAD: Did you just hear it on the sonogram?

KELLEY BENHAM: Yeah, this heartbeat pops up, and then there's the baby. And you can see her 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 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.

JAD: Oh!

KELLEY BENHAM: But eventually they got the contractions stopped. They got the bleeding stopped. They put me in a hospital room, and they said "Get to 24 weeks, because that's—that's the limit."

JAD: So four more weeks.

KELLEY BENHAM: Yeah. It was almost like they draw a line in the sand. Like, you must get to 24 or there's no hope.

JAD: And why 24? What's special about then that number?

KELLEY BENHAM: 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.

[ARCHIVE CLIP, Supreme Court: In Fondgren versus State, for example, the court ruled that a woman who commits an abortion on herself is guilty of no crime.]

JAD: Okay. So here's the story as I understand it, Robert.

ROBERT: Okay.

JAD: 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.

ROBERT: Right.

JAD: 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.

ROBERT: The problem, of course, is where you draw that line?

NITA FARAHANY: Now that is the million-dollar question. [laughs]

ROBERT: This is Nita Farahany. She's a law professor at Duke University.

NITA FARAHANY: So the kind of best guess at that point, the best medical objective standard that the justices could come up with ...

JAD: And this is in 1973.

NITA FARAHANY: ... was 'viability.'

ROBERT: And the word 'viable' in this case means can it survive on its own?

NITA FARAHANY: Yes, outside of the woman's womb.

ROBERT: 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.

JAD: Because across that line, a fetus ...

NITA FARAHANY: Is ...

JAD: Quote ...

NITA FARAHANY: ... viable.

JAD: So then the question was: when does a fetus cross that line? When can it survive on its own?

[ARCHIVE CLIP: Well, we begin, Mr. Justice, in our brief with the development of the human embryo.]

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

ROBERT: The fetus's brain and heart begin to develop.

JAD: Eight weeks, nerve fibers.

ROBERT: 13 to 16 weeks, the fetus begins to move and then kick.

JAD: At 23 weeks, some fetuses respond to familiar sounds like a mother's voice.

ROBERT: And at 24 weeks ...

JAD: Air sacs form in the lungs. And the thinking was maybe that's the point, the minimum point where the fetus is viable, because perhaps it could breathe on its own. But this was just a theoretical idea. No one was testing it.

ROBERT: No one was trying to take the fetus out of a mother at 24 weeks to see if it would survive.

JAD: In fact, throughout the '70s and '80s, most hospitals, according to Kelley, drew the line of viability back a little bit farther at 28 weeks.

KELLEY BENHAM: 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.

JAD: So for a long time, the actual viability line, not the theoretical one, was 28 weeks. But then in the late '70s ...

KELLEY BENHAM: Someone invented an artificial lung surfactant. It's kind of a slippery white stuff that they shoot down the ventilator tube when the baby's born.

JAD: And that ...

KELLEY BENHAM: Combined with IV nutrition ...

JAD: New super small ventilators.

KELLEY BENHAM: Moved the line of viability back to around where it is now.

JAD: 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.

NITA FARAHANY: So given modern technology ...

ROBERT: You could imagine, says Nita, one day the line could jump way back, which will make things really tricky.

NITA FARAHANY: If, for example, we get to the point where modern science is able to develop an artificial womb.

JAD: Yeah.

NITA FARAHANY: 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.

KELLEY BENHAM: They said get to 24 weeks because that's the limit.

JAD: Which meant that the doctors had to pump Kelley full of drugs, keep her feet elevated for at least another four weeks.

KELLEY BENHAM: But I just kept going into labor in and out of it, and they felt like they couldn't hold it off anymore.

JAD: 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.

KELLEY BENHAM: The guy comes in and he seems a little uncomfortable, like this 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 worked 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 percent chance that the baby will die no matter what we do."

ROBERT: 53?

KELLEY BENHAM: Yeah.

TOM FRENCH: Whatever we do.

KELLEY BENHAM: Whatever we do. There was a small chance that she could be fine.

JAD: And what were those chances?

KELLEY BENHAM: About 20.

ROBERT: Hmm.

KELLEY BENHAM: I felt like—like 20 percent, 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 percent means. I mean, she could be on a ventilator for the rest of her life. She could have a massive bleed in her brain and it was like eat holes in her brain and affect her ability to think or talk or walk. She could—pretty good chance she could be blind or deaf. And there was no way for the doctors to predict.

JAD: 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 Kelley 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.

KELLEY BENHAM: 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 gonna be the answer, we needed to just say that before the baby came.

TOM FRENCH: That was the worst night ever. You're trying to make up your mind about what's—what's right.

KELLEY BENHAM: Like, would we be torturing this baby for nothing?

TOM FRENCH: We didn't want her to be born and have a life that she would hate us for having.

JAD: There have been instances where children with birth defects or genetic diseases have filed wrongful life suits, essentially claiming that they should have never been born.

TOM FRENCH: We had to really debate what was in her best interests, what would she want?

KELLEY BENHAM: 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.

TOM FRENCH: And ...

KELLEY BENHAM: I think I got pretty close to no.

TOM FRENCH: 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."

JAD: But there must've been a moment where you had to say yes or no out loud.

KELLEY BENHAM: Well, we asked for a 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.

DIANE LOISEL: Yes. My name is Diane Loisel. I'm a neonatal nurse practitioner.

KELLEY BENHAM: This is the next day.

DIANE LOISEL: They had asked to speak to someone again.

KELLEY BENHAM: And instead of just citing numbers and statistics ...

DIANE LOISEL: I don't give numbers. It's different for each baby.

KELLEY BENHAM: ... she kind of started to paint a picture. "This is what I've seen. I've been doing this 30 years."

JAD: But more importantly ...

DIANE LOISEL: I also told them that it wasn't a yes or no decision.

KELLEY BENHAM: She said, "You know, you don't have to decide right now."

JAD: They could have the baby.

DIANE LOISEL: If the baby came out crying and active, then we should do everything ...

JAD: We can ...

DIANE LOISEL: For the baby.

JAD: But if the baby came out ...

KELLEY BENHAM: Blue and limp.

DIANE LOISEL: Intraventricular hemorrhage, we could stop. We didn't have to keep going.

KELLEY BENHAM: If something goes horribly wrong, we can withdraw the support, then you could hold your baby until it dies. But you can give your baby a chance and see how it goes.

ROBERT: In other words, in a very real way, they could give this decision to the baby.

KELLEY BENHAM: That same night, I was feeling like I'm just uncomfortable.

JAD: A couple hours later, discomfort turns to pain.

KELLEY BENHAM: 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.

JAD: And what did she look like?

KELLEY BENHAM: Well, I didn't see her then. I just saw, like, her kind of whiz by in an incubator, and she just looked like a little dark smear it a hat.

JAD: And did you make it to 24 weeks?

KELLEY BENHAM: So we were one day shy of 24.

ROBERT: 23 weeks and six days.

JAD: If you'd like to see more of this story that you've been listening to, we've actually made a short film, which you can find at Radiolab.org/23weeks. That's the number 23. Radiolab.org/23weeks And I would suggest that you wait until you finish listening though, be cause the film does contain spoilers.

ROBERT: We'll be back in just a moment.

[KELLEY BENHAM: Hi, this is Kelley French.]

[TOM FRENCH: This is Tom French. I'm leaving the credits.]

[KELLEY BENHAM: Here we go.]

[TOM FRENCH: Okay, here we go. I'll try it. Radiolab is supported in part by the National Science Foundation.]

[KELLEY BENHAM: And the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world.]

[DIANE LOISEL: Hi this is Diane Loisel. More information about Sloan can be found at www.sloan.org]

[TOM FRENCH: Radiolab is produced at WNYC.]

[DIANE LOISEL: WNYC.]

[KELLEY BENHAM: And distributed by NPR.]

JAD: Hey, I'm Jad Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: This is Radiolab.

ROBERT: Today we're spending the entire hour on a single story which we saw in the Tampa Bay Times. Kelley Benham, a journalist, published an unbelievably wonderful set of articles about her and her husband, Tom French, who is also a journalist. They had a baby, except their baby came very, very early. So full term, as we've mentioned, is 40 weeks. Their daughter arrived 23 weeks and six days, which works out to be just a little bit over halfway.

JAD: Now just to put that in context, if the 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 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 we have to answer some really tough questions.

ROBERT: Like should my baby live? At what cost?

JAD: And who gets to decide?

ROBERT: And ultimately, when does life begin?

KELLEY BENHAM: And she has shown us that so many ...

ROBERT: Kelley and Tom, like many parents who land in this zone, decided that for the hardest question ...

KELLEY BENHAM: Ultimately it's up to the baby.

ROBERT: The baby will tell them whether it's gonna stay or whether it's gonna go.

JAD: 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.

KELLEY BENHAM: And they incubate her.

ROBERT: For the first time.

KELLEY BENHAM: 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.

JAD: Hmm.

KELLEY BENHAM: You could just see right through her. You could see all the veins running under her skin, and you could see her heart thumping in her chest.

JAD: Wow.

KELLEY BENHAM: And her eyes were sealed shut like a puppy, and she was like, beat up. Like, she had bruises all over her body, and she had a black eye just from the—you know, they are really 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—the minute you meet your daughter, there's gonna 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.

TOM FRENCH: 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 I was—that thought was filled 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.

TOM FRENCH: And the nurse Gwen, she said, "Well, you can touch her, you know?" And I was stunned because I didn't think I would be able to. And so she had me—I had 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—you just press gently.

TOM FRENCH: And so the baby was lying there, not with her fists, but with her arms extended with her palms open. So her right palm was right there when I reached my left hand in, and I just put my left finger gently into her palm and she just grabbed on tight. And in that moment, all my fears about not being able to bond with her washed away. And what got to me was how I could be so afraid when she was so strong. And at that point, I just—she was the most beautiful thing I'd ever seen. And I told her—I told her, "Hey, peanut. It's daddy." So that's when I met my daughter.

JAD: 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. He felt like she was saying something to him.

TOM FRENCH: She made her will very, very clear.

DIANE LOISEL: The baby declared itself. Like, declared its will to live.

ROBERT: And that was a phrase we heard again and again.

KEITH BARRINGTON: Some babies will—if I can use the term, 'declare' themselves over the first few hours and days of their life.

ROBERT: That's a neonatologist we spoke to, Keith Barrington.

DIANE LOISEL: You get a gut feeling.

ROBERT: And that's Diane Loisel again, the nurse practitioner.

DIANE LOISEL: After meeting the baby, that this one looks very fragile or this one can do it.

JAD: The baby has declared itself. Now there's a real question as to, like, what does that mean? What are you seeing when something that premature declares itself? And here we ran into a real difference. Parents will often see will.

KELLEY BENHAM: An incredible will and resolve.

ROBERT: Doctors and nurses ...

KELLEY BENHAM: No.

JAD: Not so much.

KEITH BARRINGTON: That sounds a bit too mystical for me.

TRACY HOLLIT: I wouldn't take it as there's a voice inside the baby saying "I'm gonna be a fighter," or "I'm not. One is sick enough not to be able to fight and one isn't.

ROBERT: Can you see a spirit in a kid?

TRACY HOLLIT: I think you can see some fight. I call it spunk a lot of times.

JAD: That is Tracy Hollit.

TRACY HOLLIT: I'm a registered nurse.

JAD: She was Kelley and Tom's primary nurse.

TRACY HOLLIT: At All Children's Hospital.

JAD: And like everyone we spoke to on the hospital side, when it comes to this issue, she chooses her words very carefully.

TRACY HOLLIT: I maybe try to keep things a little bit more neutral than talking about their will to live.

JAD: Because, you know, a baby at 23 weeks barely has folds on the outside of its brain. Its brain is still smooth for the most part, so who knows what it's capable of thinking or feeling?

TRACY HOLLIT: Oh, that's a difficult question.

JAD: And the truth is things like ...

TRACY HOLLIT: Fight, spunk ...

JAD: May just boil down to physiology.

TRACY HOLLIT: Maybe that baby had a few more lung buds to start with.

JAD: Maybe it had an easier time in utero. It may have nothing to do with will. In fact ...

TRACY HOLLIT: 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.

ROBERT: Because you know, putting yourself in the parent's head, if you've got to decide how much am I gonna push, how much of my heart am I gonna 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 got to make this decision.

KEITH BARRINGTON: Yes. My wife, a professional ethicist, often says we don't make important decisions in our life for rational reasons very often.

JAD: Keith and his wife, Annie Janvier 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.

KEITH BARRINGTON: She weighed 720 grams.

JAD: One and a half pounds.

KEITH BARRINGTON: And she was actually in my own NICU.

JAD: Oh wow!

KEITH BARRINGTON: I was actually the director of the unit where she was.

JAD: So he was in his unit. you know, 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.

KEITH BARRINGTON: She actually didn't move at all for about 36 hours. And we thought maybe it was a little ...

JAD: Maybe it's time.

KEITH BARRINGTON: Yeah.

JAD: So they decided, he and his wife, to let her go peacefully.

KEITH BARRINGTON: But I went back into the NICU to see her.

JAD: And something happened. He looked down and he saw her lips move—barely.

KEITH BARRINGTON: She started sucking on a soother one of the nurses had put in her mouth.

JAD: She was sucking on a pacifier. And it was just a reflex, the most basic baby reflex, the sucking reflex. He knew that.

KEITH BARRINGTON: But just that movement of sucking on a soother ...

JAD: Changed his mind completely.

KEITH BARRINGTON: I went back to Annie and said, "We can't stop. We really need to continue and give her the chance.

ROBERT: But you knew that the sucking responses is not—that's a fairly deep brain ...

KEITH BARRINGTON: Yes. It's a very basic—it's just the brainstem. It's not, you know—and you need a lot more than be able to suck to do well. But as I say, I was trying to be the parent there, not the neonatologist.

ROBERT: Could you remember if the doctor in you was surprised at the father in you?

KEITH BARRINGTON: 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.

KELLEY BENHAM: 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?

JAD: Yeah.

KELLEY BENHAM: 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? I felt like she might die and like it wouldn't count and I wouldn't be a mother, you know what I mean? And, like, what if she died? What would happen? Like, would we have a funeral? Do they make caskets the size of shoe boxes? I mean all of 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. I wondered, like, if she knew—was she really aware that I was even standing there or, 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? Did she feel alone? And is she scared?

JAD: All she could really do at that point was sit with those questions.

KELLEY BENHAM: And it just became this waiting game.

JAD: We'll continue in a moment.

[LISTENER: Hey guys, this is Steve Chavello calling from Priceville, Ontario, Canada. Radiolab is supported in part by the National Science Foundation and by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org.]

JAD: Hey, I'm Jad Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: This is Radiolab.

ROBERT: And we are spending the whole hour with Tampa Bay Times reporter Kelley Benham and her husband, Tom French.

JAD: And the story that they're telling us ...

ROBERT: It's about this limbo, a space that's literally between life and death.

JAD: Where you have to tackle some really big questions.

TOM FRENCH: Yeah.

JAD: Oh, here's an easy one. Tom, when did you decide to name your daughter Juniper?

TOM FRENCH: About five days after she was born.

JAD: Now in those five days, pretty much everything in their lives changed. I mean, on the most superficial level, they began their hospital stay day zero in the maternity ward, which had butterflies on the walls and ...

KELLEY BENHAM: Images of roses opening. [laughs] And everyone's really good looking.

JAD: Like in an ER sort of way or ...

KELLEY BENHAM: 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?"

ROBERT: [laughs]

KELLEY BENHAM: "When is Cupcake coming by?" And ...

JAD: So that's where their hospital journey began. But five days later, everything had changed, and they'd find themselves on a different floor of the hospital, stranded in this unit that is perhaps more than any other place on Earth, the physical embodiment of this limbo, the neonatal intensive unit, the NICU. Where they just have to wait and hope that that will or whatever it was they saw on Juniper takes hold.

KELLEY BENHAM: 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'd just been dropped into this, like, science fiction. Nothing was recognizable. Babies didn't look like babies. There was one baby that had his intestines outside of his body, like, piled up on his belly, like in this bag. And everyone's wearing a uniform. Don't know who anyone is. And everything's, like, beeping and humming.

KELLEY BENHAM: And you don't know how long you're gonna 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—even for an hour to get some lunch because the baby could die.

TOM FRENCH: You know, if we went home to get some sleep, would she die?

KELLEY BENHAM: It was that critical.

TOM FRENCH: And she had roughly five, six days that went pretty well, and then that next weekend ...

KELLEY BENHAM: She blew a hole in her intestines.

TOM FRENCH: That was the real beginning of a lot of problems.

KELLEY BENHAM: And her belly turned dark and got real distended.

TOM FRENCH: They were inserting drains.

KELLEY BENHAM: In the belly.

TOM FRENCH: To try to drain away ...

KELLEY BENHAM: The stool and gunk. And she just had this little straw sticking out of her belly.

TOM FRENCH: 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.

JAD: So in quiet moments, what Tom would do ...

TOM FRENCH: Chapter one, the boy who lived.

JAD: ... is he would stand over Juniper's incubator and he would read her Harry Potter.

TOM FRENCH: "Mr. and Mrs. Gersley of Number 4, Privett Drive were proud to say that they were perfectly normal, thank you very much. They were the last people you would expect to be involved in anything strange or mysterious."

TOM FRENCH: As I started reading to her, and as the days went on—she has no idea what I'm reading, right?

JAD: Right.

TOM FRENCH: But there is something there that she responded to. I wanted to say she liked it because her—her SAT number would go high at that point.

JAD: Her SAT number. What is that, like her oxygen?

TOM FRENCH: The saturation of oxygen in her blood.

JAD: Ah.

JAD: Tom says that number on the monitor was one of the only ways that they could get feedback about how she was doing because, you know, her eyes are still closed. There'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.

TOM FRENCH: Not just slowly but instantly.

ROBERT: Huh.

TOM FRENCH: But then when I got deeper into the story, I read in Haggard's voice. "'Bowed it, Professor Dumbledore, sir' said the giant, climbing carefully off the motorcycle as he spoke." And she deSATed instantly. [laughs]

KELLEY BENHAM: And the alarms are just going off and going off and going off. [laughs]

TOM FRENCH: And Kelley 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 than you want to find out what happens next.

ROBERT: Unfortunately, what happens next is that ...

TOM FRENCH: One night at around two o'clock in the morning.

ROBERT: On a rare night that they actually went to sleep at home, they get a call from their doctor.

TOM FRENCH: 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.

KELLEY BENHAM: We rushed to the hospital.

ROBERT: And when they get there, they were told ...

KELLEY BENHAM: That she did it again. She got another hole. Another hole in her intestines. And she started to really spiral, to really go downhill.

ROBERT: Her blood pressure and oxygen levels were crashing.

KELLEY BENHAM: She was on 100 percent 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're giving your baby 100 percent oxygen, they can't give her any more.

FAUZIA SHAKEEL: At that point, I had done everything that I could possibly do.

JAD: This is Fauzia Shakeel.

FAUZIA SHAKEEL: Neonatologist at All Children's Hospital.

JAD: 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.

FAUZIA SHAKEEL: But obviously it was not enough.

KELLEY BENHAM: Something was wrong.

FAUZIA SHAKEEL: Terribly wrong.

TOM FRENCH: We might lose her at any second.

JAD: The only option left ...

KELLEY BENHAM: To take her to the operating room, and cut her open.

FAUZIA SHAKEEL: Clear the intestines, relieve the pressure.

JAD: How do you do a surgery on a one-pound baby? Seems ...

KELLEY BENHAM: No, exactly. I mean, you don't.

FAUZIA SHAKEEL: She was so extremely premature, so fragile.

JAD: So tiny that operating seemed kind of crazy, and Dr. Shakeel began to really consider the idea that maybe this was it.

FAUZIA SHAKEEL: And at that point I was at bedside looking at her ...

JAD: Trying to figure out what to do

FAUZIA SHAKEEL: ... and all of a sudden she opened her eyes.

JAD: Really?

FAUZIA SHAKEEL: Yeah. She opened her eyes wide and she looked at us.

KELLEY BENHAM: Her eyes were, like, wide open, and she was looking right at the doctor.

FAUZIA SHAKEEL: Directly.

KELLEY BENHAM: Staring at her hard.

FAUZIA SHAKEEL: And it was a very powerful moment.

JAD: Doctor Shakeel says she decided right then and there we're going to surgery.

FAUZIA SHAKEEL: I think she deserves a chance.

JAD: Tell me more about why you made that decision.

FAUZIA SHAKEEL: Well, typically babies who are that critical, they're totally unresponsive.

JAD: Yeah.

FAUZIA SHAKEEL: 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 was a very powerful statement that "I'm still here."

KELLEY BENHAM: "I am here, I am still here. Don't give up."

JAD: So Dr. Shakeel summoned the pediatric surgeon, told her they wanted to move forward with the operation, but the surgeon said ...

KELLEY BENHAM: No. The surgeon was adamant that she did not want to do it.

FAUZIA SHAKEEL: She said it's futile. And she had blood pressure so unstable that she will not make it out of the OR.

JAD: And the surgeon told her, "Even if I can open her up and do the job, her skin is so papery that I might not be able to sew her back."

NITA FARAHANY: There are guidelines that medical industries have, even basic things like the Hippocratic oath of do no harm.

ROBERT: That's law professor and ethicist Nita Farahany again.

NITA FARAHANY: 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 ...

ROBERT: And the only way to do no harm and fulfill your oath is not to do the surgery.

NITA FARAHANY: But ...

ROBERT: She says, if you ask the courts ...

NITA FARAHANY: You know, right now the law favors life.

ROBERT: The courts have seen very few cases that involve disputes like this, but in every one so far she says, they've supported the person who's arguing to keep the child alive.

FAUZIA SHAKEEL: Whenever there's life, there's hope. So this is our window—we should do it now.

JAD: For Dr Shakeel, the argument that ultimately won the day was simply this:

FAUZIA SHAKEEL: Basically what I told her was that if you think she's gonna die ...

JAD: Well ...

FAUZIA SHAKEEL: ... she is dying right now as we speak in the unit.

JAD: So we can either do nothing and she definitely dies or we can do something and she probably dies, but you never know.

FAUZIA SHAKEEL: There is a slim chance.

KELLEY BENHAM: So they're wheeling the incubator with the baby in it, and I'm holding her little hand and she's getting ready to go into surgery. And she was looking right at me, and she hadn't done that before. I mean, it really seemed like she was aware that I was there very clearly and she was locked on my face. So I leaned over and I gave her a little kiss on her forehead, and Tom did the same thing and then they wheeled her away.

ROBERT: How long was the operation?

KELLEY BENHAM: It was—they call—they paged us much more quickly than we expected to come back, so we knew something was wrong.

JAD: The nurse ushered Tom and Kelley into a separate room.

KELLEY BENHAM: This little windowless conference room. And the surgeon came in and she said, "You know, I—" 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, she's—the way she described it was everything fell apart. It was just falling apart and falling apart.

ROBERT: And you're hearing this?

KELLEY BENHAM: Yeah.

JAD: Juniper had survived the operation, but barely.

KELLEY BENHAM: 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 gonna live 'til morning.

TOM FRENCH: I'd been really working hard to avoid thinking about all the bad things that were possibly gonna happen here, and just trying to hold on, you know? And I sort of thought it was my job to do that. And it's kind of funny, kind of stereotypically male of me. [laughs] And ...

JAD: And Tom says they were in the car around the time of the surgery.

TOM FRENCH: As we're driving, you know, by that time Junebug 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.

TOM FRENCH: That thought let in all the other thoughts, very difficult thoughts about all the things we wouldn't get to do with her and she would never get to know. And I had this terrible thought that, you know, she was in this incubator, this isolated plastic box. And I had this terrible thought that she was just gonna go from one box to another. And I had to pull over, you know, because I just lost it. And at that point I wasn't maintaining anymore. There was no holding back this flood of what was happening. And we had a rule, Kelley 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.

KEITH BARRINGTON: We're in a very unnatural situation at 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.

JAD: Neonatologist, Keith Barrington.

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 deaths of babies. And now that has become much less common to lose a baby. Even, you know, miscarriages and stillbirths are now—we're realizing how much that hurts. And in the past, maybe we've hidden some of that from ourselves.

KELLEY BENHAM: No way the baby was going to live 'til morning. But what happened was really strange. She continued to just not die. And the next day she—you know, she was still there. The surgeon was surprised and ...

JAD: No one can quite explain it.

KELLEY BENHAM: The more I thought about it, the more I found it, like, surprising and interesting, you know, because she doesn't know that there's a better place. You know, she's just in this box.

JAD: Yeah.

KELLEY BENHAM: And she's gotten 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.

JAD: After the surgery, things did not get easier.

TOM FRENCH: She would stop breathing many times a day. Teams would rush in to ...

KELLEY BENHAM: And I'd say, "Come on, Juniper. Come back! Come back!" I remember the room spinning.

TOM FRENCH: And then ...

KELLEY BENHAM: She started to swell for, like, weeks and weeks.

JAD: But she continued ...

KELLEY BENHAM: To not die.

JAD: And she began to gain weight.

TOM FRENCH: And, you know, nurses are very superstitious, a lot of them. They won't say the word 'home.'

TRACY HOLLIT: For some reason, when the babies hear that word ...

JAD: This is Tracy Hollit again, primary nurse.

TRACY HOLLIT: ... they get sick and we just—it's a superstition obviously, but something happens and sometimes it can be devastating.

ROBERT: So what do you say instead?

TRACY HOLLIT: We'll say that place that the baby's gonna go when they leave here.

JAD: Wow, my God.

ROBERT: Oh, so tortured.

TRACY HOLLIT: Sometimes we spell it, which makes no sense at all. [laughs]

TOM FRENCH: 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.

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

KELLEY BENHAM: Car seats, right? But when you're—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? Like—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.

JAD: Wow.

KELLEY BENHAM: And we all kind of walked out, and Tracy's really not a hugger, but we, like, grabbed her and hugged her and cried all over her shirt. And then we put the baby in the car and we went to Chick-Fil-A.

JAD: [laughs]

ROBERT: Went to Chick-Fil-A.

KELLEY BENHAM: Yeah. That was totally before the gay thing, before I stopped going to Chick-Fil-A.

JAD: And all in all, how long were you in the hospital for?

KELLEY BENHAM: Six and a half months. It was 196 days.

JAD: How is Juniper now? What is—can you give us a snapshot of her morning?

TOM FRENCH: Sure.

JAD: Actually, Tom and Kelley were nice enough to allow us to send a reporter to their house to meet her.

JENNIFER: Good morning.

KELLEY BENHAM: Good morning.

ROBERT: She's two years old now.

JENNIFER: Hi. Good morning.

KELLEY BENHAM: That's Junebug.

JENNIFER: Good morning, Junebug.

TOM FRENCH: That's Jennifer. Say hi.

ROBERT: When we got there, she was still—she was in bed. She was just waking up.

KELLEY BENHAM: She's not being really cuddly this morning.

JAD: But then she just sprung up, jumped out of bed and took off.

[footsteps running]

KELLEY BENHAM: Where's Junebug, huh?

JUNIPER: [laughs] Daddy!

KELLEY BENHAM: Yeah, he went to Daddy. Isn't that funny?

JUNIPER: Kitty.

KELLEY BENHAM: Come on, show me where the kitty is. I know you want to give the kitty a hug. She's nice. Nice hug.

JAD: She's kind of your typical two year old.

ROBERT: And because we were there, Juniper felt it was kind of important that we see some tricks she's learned.

KELLEY BENHAM: [laughs] [applauds] Yay! Perfect! You know what, though? This is radio, so they have no idea what you just did.

TOM FRENCH: You did 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.

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

TOM FRENCH: It wouldn't even be on journalistic radar. But what you know as a parent, especially after you've been through what we went through ...

KELLEY BENHAM: Come to Mommy, I want to kiss you.

TOM FRENCH: ... was everything happened.

KELLEY BENHAM: I'm gonna kiss you and there's nothing you can do about it either. We ready?

TOM FRENCH: Everything happened yesterday in those couple of hours. The entire world was contained inside that morning.

KELLEY BENHAM: Can I have some more kisses?

TOM FRENCH: And all of her—all of the blank chapters of her life were inside that morning waiting to be written.

KELLEY BENHAM: Which one? You want this book? Come here.

JAD: And do you feel like you're out of the woods?

TOM FRENCH: Well, um ...

JAD: Both Tom and Kelley said no way. And then Tom tell us about these flu shots that gets.

TOM FRENCH: They're not just flu shots. They're like flu shots, like super flu shots. And they—there's four shots you get and I swear to God that cost $14,000 for those four shots. And ...

JAD: That's a real number you just said?

TOM FRENCH: That's a fact. That's a fact.

JAD: Jeez!

TOM FRENCH: They are designed to help protect her from RSV.

JAD: Which is a virus that in most people just presents as a common cold.

TOM FRENCH: But, you know, she—her lungs are still recovering and are still developing, and RSV can be devastating.

JAD: 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.

KELLEY BENHAM: 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 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."

JAD: And in case you're wondering, Keith Barrington the neonatologist we spoke to earlier, when we asked him how his daughter's doing ...

JAD: Out of curiosity, how is—how is Violette doing now?

KEITH BARRINGTON: She is great. She's coming to the end of her first grade in school and she's perfect.

JAD: 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.

ROBERT: A big thank you to All Children's Hospital in St. Petersburg, Florida, for letting us talk to pretty much everybody and ...

JAD: And record the sounds of the NICU. And thank you, huge thank you to Matthew Kielty for production help on this story and many late nights.

ROBERT: And we also recommend that if you can, you should take a look at Kelley Benham's articles. It's a series of articles that ran in the Tampa Bay Times, and we have linked to it on our website. So if you want to read the very beautiful version of what we've just told you, it's all there waiting for you.

JAD: Radiolab.org. I'm Jab Abumrad.

ROBERT: I'm Robert Krulwich.

JAD: Thanks for listening.

[TRACY HOLLIT: Hi, this is Tracy Hollit. Radiolab is produced by Jad Abumrad. Our staff includes Ellen Horne, Soren Wheeler, Pat Walters ...]

[TOM FRENCH: Tim Howard, Brenna Farrell ...]

[KELLEY BENHAM: Molly Webster, Malissa O'Donnell ...]

[TRACY HOLLIT: Dylan Keefe, Lynn Levy and Andy Mills.]

[TOM FRENCH: With help from Matt Kielty, Kelsey Padgett and Megan Tam.]

[KELLEY BENHAM: Special thanks to Lynn Paltrow, Jennifer Jonkers and John Lantos.]

[ANSWERING MACHINE: End of message. Goodbye.]

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