Apr 22, 2014

23 Weeks 6 Days

When Kelley Benham and her husband Tom French finally got pregnant, after many attempts and a good deal of technological help, everything was perfect. Until it wasn't. Their story raises questions that, until recently, no parent had to face… and that are still nearly impossible to answer.

This hour, we spend the entire episode on the story of Kelley and Tom, whose daughter was born at 23 weeks and 6 days, roughly halfway to full term. Their story contains an entire universe of questions about the lines between life and death, reflex and will, and the confusing tug of war between two basic moral touchstones: doing no harm...and doing everything in our power to help. Kelley has written about her experience in a brilliant series of articles in the Tampa Bay Times. And when you're done listening to the episode, be sure to check out the video below--but be warned, it does contain spoilers. 

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Robert Krulwich:          Kelly, can you hear me?

Kelly Benham:              Yeah.

Robert Krulwich:          Okay, good. All right, so we're just doing this because-

Jad Abumrad:               Because that article of yours-

Robert Krulwich:          That was so beautiful.

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

Kelly Benham:              Oh, thank you.

Jad Abumrad:               Okay. I'm Jad Abumrad.

Robert Krulwich:          I'm Robert Krulwich.

Jad Abumrad:               This is Radiolab and today a story about a decision.

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

Robert Krulwich:          Yeah, sure there are stories like this elsewhere, but somehow-

Kelly Benham:              Not too many.

Robert Krulwich:          Maybe not.

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

Robert Krulwich:          Think it is. And the story comes to us from a woman named Kelly Benhnam. She's a reporter for the Tampa Bay Times in Florida. Maybe the way to do this chronologically, just sort of across time, where were you and who, what did you want to do?

Kelly Benham:              When I decided to have a baby?

Robert Krulwich:          Yeah.

Jad Abumrad:               Where you one of those people who ever since you were young, you knew that you would be a mom.

Kelly 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 might have a daughter.

Jad Abumrad:               And a daughter and not a son.

Kelly 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.

Robert Krulwich:          And what was the image?

Kelly Benham:              Like Really Feisty, mischievous, dark hair, dirty face.

Jad Abumrad:               Okay. We've left princess land now.

Kelly 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 Abumrad:               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.

Tom French:                 I had two kids, sons approaching the end of college and I was ready to travel. I wanted to see as Spain and Greece and-

Robert Krulwich:          The world tour on the cruise ship where you get to be the, you know, poker master, whatever you family-

Tom French:                 The only world tour I would have been insured with Springsteen.

Jad Abumrad:               Springsteen.

Tom French:                 Following Springsteen around Europe. I'd made up my mind no more kids, but she was insistent.

Kelly Benham:              I stuck to it.

Tom French:                 She saw our daughter very clearly.

Kelly Benham:              Oh yeah.

Tom French:                 And saw that I was destined to be that little girl's father.

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

Kelly Benham:              Oh, it 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.

Tom French:                 The line was the mailboxes.

Jad Abumrad:               There really was line. Wow. Yeah.

Kelly Benham:              It was a horrible time. We call it the dark era.

Tom French:                 The dark period.

Robert Krulwich:          What turned you?

Tom French:                 It was the Halloween section of Target. My sons and I have loved Halloween forever. I love it when I was a little kid and I just wanted to see what they have. 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.

Kelly 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, remember those words. So I had this come to Jesus meeting with myself among the gargoyles and that was when I realized I need to just take a step back and try to restart the conversation with Kelly.

Kelly Benham:              And so then he, you know, went home and wrote me this long letter and I just, I was over in by that point I was like, I wasn't looking back. So you know, over a few months.

Jad Abumrad:               So it took a little while. They patched things up, eventually got married and started trying to make a baby.

Kelly Benham:              We thought that this would just happen right away. And then of course it didn't,

Tom French:                 After trying and trying-

Kelly Benham:              The regular way.

Tom French:                 She took

Kelly Benham:              Drugs that make you drop a bunch of eggs at one time.

Tom French:                 After that.

Kelly Benham:              The Turkey based or method, there's like kind of a process that they walk you through.

Tom French:                 After Turkey baster-

Kelly Benham:              IVF.

Tom French:                 Test tube stuff.

Kelly Benham:              Yeah. And I never thought that it would get that far.

Tom French:                 But it would go farther because after trying IVF.

Kelly Benham:              Three times.

Tom French:                 That didn't work.

Kelly Benham:              So they said, well, you can try it with an egg donor.

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

Kelly Benham:              And that's kind of the magic bullet it seems in fertility is kind of like if you don't know what's wrong with your car, you just replace the whole engine.

Jad Abumrad:               Kelly asked a good friend to be an egg donor or they've been planted the egg and shortly after she took a pregnancy test.

Kelly 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 to dial up the contrast to make the line appear.

Jad Abumrad:               That is everything about this is so high tech. Right.

Robert Krulwich:          Wow. And what did you see what you wanted to see?

Kelly 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 Abumrad:               And did you go into like the expectant parent mode and-

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

Jad Abumrad:               five months into her pregnancy, 20 weeks, which is just about halfway cause a full term is 40. Kelly was at a park playing with her dog.

Kelly Benham:              And I just, I felt a little bit weird and just started to bleed like not a lot, but any amount of blood, it's 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 check.

Tom French:                 And I went to pick her up. Then by the time we got to the hospital, she was in a lot of pain.

Kelly 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 babies kind of drop out on the floor. I was throwing up and then the doctor came in and he looked scared.

Robert Krulwich:          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 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 who's ever grabbed my arm.

Kelly Benham:              And I remember just asking him, don't let me die.

Tom French:                 Please don't let me die. It was terrifying.

Kelly 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 and 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 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 [inaudible 00:08:50] there, it was just its heart beat.

Jad Abumrad:               This is sound she recorded on her cell phone.

Kelly Benham:              Baby's heartbeat. Super, super fast. So it sounds like a rabbit or something.

Jad Abumrad:               You just hear it on the Sonogram.

Kelly 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 where she's just right there. So now I thought, "oh my God, I'm going to 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.

Kelly Benham:              But eventually they got the contractions stop. They got the bleeding stopped. They put me in a hospital room and they said get to 24 weeks cause that's, that's the limit.

Jad Abumrad:               So four more weeks.

Kelly Benham:              Yeah. It was almost like they drawn a line in the sand like you must get to 24 or there's no hope.

Jad Abumrad:               And why 24 what's special about then that number?

Kelly 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.

Speaker 8:                    In [inaudible 00:10:26] verses [inaudible 00:10:26] for example, the court ruled that a woman who commits an abortion on herself is guilty of no crime.

Jad Abumrad:               Okay. So here's the story as I understand it Robert. In Roe V Wade, the supreme court was trying to strike this balance. They wanted to protect a woman's right to choose as we know. But they also wanted to say that there are limits to that. That there is some moment in the development of the fetus and the course of this pregnancy. Will 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 Krulwich:          The problem of course is weird you draw that line.

Kelly Benham:              Now that is the million dollar question.

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

Nita Farahany:              So the kind of best gas at that point, the best medical objective standard that the justices could come up with.

Jad Abumrad:               And this is in 1973.

Nita Farahany:              Was viability.

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

Nita Farahany:              Yes, outside of the woman's womb.

Robert Krulwich:          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 Abumrad:               Because of across that line a fetus-

Nita Farahany:              Is viable.

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

Speaker 11:                  Well, we begin the [inaudible 00:11:46] in our brains development of the human embryo.

Jad Abumrad:               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 to go like this, three weeks-

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

Jad Abumrad:               Eight weeks nerve fibers.

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

Jad Abumrad:               At 23 weeks. Some fetuses respond to familiar sounds like a mother's voice.

Robert Krulwich:          And at 24 weeks.

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

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

Jad Abumrad:               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.

Kelly 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 Abumrad:               So for a long time, the actual viability line, not the theoretical one, was 28 weeks, but then in the late seventies-

Kelly Benham:              Someone invented an artificial lung surfactant. It's kind of a slippery white stuff that they shoot down the ventilator tube and the baby's born. And that combined with Ivy Nutrition.

Jad Abumrad:               New super small ventilators.

Kelly Benham:              Moved the line of viability back to around where it is now.

Jad Abumrad:               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 Krulwich:          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. Yeah. Does viability start at the point of a fertilized egg? You know, if the standard is the point at which the developing child can actually survive outside of the womb using any technological intervention possible, that is a slippery line indeed.

Kelly Benham:              They said get to 24 weeks because that's the limit.

Jad Abumrad:               Which meant that the doctors had the pump Kelly full of drugs, keep her feet elevated for at least another four weeks.

Kelly 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 Abumrad:               And at 23 weeks and four days, a doctor tells her that there's nothing more they can do. The baby is going to come in a day, maybe two.

Kelly Benham:              The guy comes in and he seems a little uncomfortable like this. It was not pleasant for him. He said, you know, your baby's probably coming in 24 to 48 hours and we know how hard you work to have this baby and we know how much you want this baby and we assume that you want everything done. What does that mean? We had no idea. So we said, "We're not sure if we do want everything done. Paint the picture for us doctor."

Kelly Benham:              And he said, you know, there's about a 53% chance that the baby will die no matter what we do.

Jad Abumrad:               53.

Kelly Benham:              Yeah.

Jad Abumrad:               Whatever we do.

Kelly Benham:              Whatever we do, there was a small chance that she could be fine.

Jad Abumrad:               And what were those chances?

Kelly Benham:              About 20. I felt like like 20% you know it's not an impossibility. It seems like a reasonable... it seems like worth a gamble until you really think about what the 80% means. I mean she could be on a ventilator for the rest of her life. She could have a massive bleed in her brain and there was like eat holes in her brain and affect her ability to think or talk or walk.

Kelly Benham:              She could pretty good chance she could be blind or deaf. And there was no way for the doctors to predict.

Jad Abumrad:               But what the doctors did know is that when the baby came into the world it would need a ton of medical support. It may even need to be revived. And so the question for Tom and Kelly was, do they want the doctors to do that? Do they want them to pursue every measure possible? or no? And just let nature take its course.

Kelly Benham:              And he said 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 one's going to be the answer, we need 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 right.

Kelly 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 you would hate us for having.

Jad Abumrad:               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?

Kelly 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 or 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.

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 to the Monitor. Baby was letting us know all night. I'm right here. I'm right here.

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

Kelly Benham:              Well we asked for a second opinion or not a second opinion, but another console. We had some more questions and at nurse practitioner from the NICU came to the room.

Diane:                          My name is Diane [Lowisell 00:18:27]. I'm a neonatal nurse practitioner.

Kelly Benham:              This is the next day.

Diane:                          They had asked to speak to someone again.

Kelly Benham:              And instead of just citing numbers and statistics.

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

Kelly Benham:              She kind of started to paint a picture. "This is what I've seen. I've been doing this 30 years."

Jad Abumrad:               But more importantly.

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

Kelly Benham:              She said, you know, you don't have to decide right now.

Jad Abumrad:               They could have the baby.

Kelly Benham:              The baby came out crying and active than we should do everything-

Tom French:                 We can-

Kelly Benham:              For the baby.

Tom French:                 But if the baby came out, blue and limp

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

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

Kelly Benham:              That same night I was feeling like I'm just uncomfortable.

Tom French:                 A couple hours later, discomfort turns to pain.

Kelly 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. 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.

Jad Abumrad:               And what did she look like?

Kelly Benham:              Well, I didn't see her then. I just saw like her kind of Whiz by in an incubator and she just thought I got a little dark, smear it a hat.

Jad Abumrad:               And did you make it to 24 weeks?

Kelly Benham:              So we were one day shy of 24.

Robert Krulwich:          23 weeks and six days.

Jad Abumrad:               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@radiolab.org/23weeks. That's the number 23 radiolab.org/23weeks And I would suggest that you wait until you finish listening though cause the film does contain spoilers.

Robert Krulwich:          We'll be back in just a moment.

Kelly Benham:              Hi, this is Kelly French.

Tom French:                 This is tom French we are leaving the credit. Radiolab is supported in part by the national science foundation-

Kelly Benham:              And the Alfred P Sloan Foundation enhancing public understanding of science and technology in the modern world.

Diane M:                      Hi this is Diane [Mellisa 00:21:13] More information about Sloan can be found@wwwdotsloan.org

Kelly Benham:              Radiolab is produced WNYC.

Diane M:                      WNYC and district by NPR.

Pat Walters:                 Hey everybody. Pat Walters here, producer at radio lab, and I'm here because I need your help. This summer I'm hosting a series of stories on the show and I have requests for those of you who spend a lot of time with kids, parents, aunts and uncles, teachers. We're looking for stories about what we're calling tiny moments of childhood brilliance.

Pat Walters:                 Basically, I want to hear about those times when a kid, you know, did something that just made you lean back and say, "Whoa, how did they do that?" Maybe it was the moment that a kid you'd been reading too for months started reading back to you or maybe the kid was at piano lessons and you suddenly noticed they were doing advanced math on the margin of their musical score, or maybe the kid was in math class and you notice they're writing music in the margin of their geometry homework.

Pat Walters:                 We're interested in those small specific moments where a kid does something super smart, but it doesn't have anything to do with the test. If you have a story, please share it with us and go to radiolab.org/brilliance and record a short audio message for us. Again, that's radiolab.org/brilliance. Thank you so much.

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Jad Abumrad:               Hey, I'm Jad Abumrad.

Robert Krulwich:          I'm Robert Krulwich.

Jad Abumrad:               This is Radiolab.

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

Jad Abumrad:               No. 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 going to intervene if a baby is born after 25 weeks. They've been all kinds of studies which show that doctors then feel morally obliged to save that life no matter what the parents say.

Jad Abumrad:               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. We have to answer some really tough questions.

Robert Krulwich:          Like should my baby live at what cost?

Jad Abumrad:               And who gets to decide.

Robert Krulwich:          And ultimately when does life begin?

Kelly Benham:              And she has shown us that so many-

Robert Krulwich:          Kelly and Tom, like many parents who land in this zone decided that for the hardest question.

Kelly Benham:              Ultimately it's up to the baby.

Robert Krulwich:          The baby will tell them whether it's going to stay or whether it's going to go.

Jad Abumrad:               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.

Kelly Benham:              And they incubator her.

Robert Krulwich:          For the first time.

Kelly 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. You can just see right through or you could see all the veins running under her skin and you could see her heart thumping in her chest. And her eyes were sealed shut like a puppy and she was like, beat up.

Kelly Benham:              Like she had bruises all over her body and she had a black eye just from the, you know, they are very careful with them when they're born, but just that very delicate handling, kind of batters these babies because they're so fragile. I mean, it was like weird. Like I didn't know how I was supposed to feel. I mean, you want to believe that the, the minute you meet your daughter, there's going to be like butterflies, you know, are 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 now that thought was filled new 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 wouldn't 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, 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 their 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 poem 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 meet my daughter,

Jad Abumrad:               When a baby is this early, the parents and the doctors are watching it very carefully. Trying to guess, is this baby ready to be out in the world? Is it going to make it? And Tom says when she grabbed his finger that wasn't just them bonding. He felt like she was saying something to him.

Tom French:                 She made her will very, very clear.

Diane:                          The Baby declared itself like declared its will to live.

Robert Krulwich:          And that was a phrase we heard again and again.

Keith B:                        Some babies will... can use the term, declare themselves over the first few hours and days of their life.

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

Diane:                          You get a gut feeling.

Robert Krulwich:          And that's Diane [inaudible 00:30:16] again, the nurse practitioner.

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

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

Kelly Benham:              An credible will and resolve.

Robert Krulwich:          Doctors and nurses.

Keith B:                        No, not so much. That sounds a bit too mystical for me.

Tracey Hollis:                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.

Robert Krulwich:          Can you see a spirit in a kid?

Tracey Hollis:                I think you can see some fight. I call it spunk. A lot of times.

Jad Abumrad:               That is Tracey Hollis.

Tracey Hollis:                I'm a registered nurse.

Jad Abumrad:               She was Kelly and Tom's primary nurse.

Tracey Hollis:                At all children's hospital.

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

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

Jad Abumrad:               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?

Tracey Hollis:                Oh, that's a difficult question. And the truth is things like-

Jad Abumrad:               Fight spunk may just boil down to physiology.

Tracey Hollis:                Maybe that baby had a few more lung buds to start with.

Jad Abumrad:               Maybe it had an easier time in Utero, may have nothing to do with will. In fact-

Tracey Hollis:                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 Krulwich:          Because you know, putting yourself in the parent's head, if you've got to decide how much am I going to push, how much of my heart am I going to pour into this little creature? Maybe if you can see something like will or something like intention. If you see, oh, that's a person in there or maybe if you don't see it, maybe it's the only way you got to make this decision.

Keith B:                        Yes. My wife, the professional ethicists often says we don't make important decisions in our life for rational reasons. Very often, no.

Jad Abumrad:               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, yeah, he and his recently had a baby girl who was born at 24 weeks and five days.

Keith B:                        She weighted 720 grams.

Jad Abumrad:               One and a half pounds.

Keith B:                        And she was actually in my own NICU.

Jad Abumrad:               Oh Wow.

Keith B:                        I was actually the director of the unit where she was.

Jad Abumrad:               So he was in his unit into the place where he usually worked. He saw babies make it not make it, and now suddenly he was a parent in that place. And several weeks after his baby was born, there was a very, very big complication.

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

Jad Abumrad:               Maybe it's time.

Keith B:                        Yeah.

Jad Abumrad:               So they decided he and his wife to let her go peacefully.

Keith B:                        But I went back into the NICU you to see her.

Jad Abumrad:               And something happened. He looked down and he saw her lips move barely.

Keith B:                        She started sucking on a soother that the nurse had put in her mouth.

Jad Abumrad:               She was sucking on a pacifier and it was just a reflex, the most basic baby reflex, the sucking reflex. He knew that.

Keith B:                        But just that movement of sucking on a soother-

Jad Abumrad:               Changed his mind completely.

Keith B:                        I went bank to Annie and said, you can't stop a really need to take continuing and give her the chance.

Robert Krulwich:          But you knew that the sucking responses is not, that's a fairly deep brain.

Keith B:                        Yes. It's a very basic, it's just the brainstem is not know you 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 Krulwich:          Could you remember if the doctor in you was surprised at the father in you?

Keith B:                        Yeah, I think I was actually a little, yeah. I think if I had to 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 it go.

Kelly 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?

Kelly 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 I'm like, "What if she died? What would happen? Like would we have a funeral? 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.

Kelly Benham:              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 later grabbed my finger and when she grabbed it, did she know that you know, I was there and if she didn't know I was there, did she wander where I had gone? Did she feel alone? And is she scared?

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

Kelly Benham:              And it just became this waiting game.

Jad Abumrad:               We'll continue in a moment.

Steve Chavela:              Hey guys, this is Steve Chavela calling from Price hill, 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 aboutSloan@www.sloan.org

Jad Abumrad:               Hey, I'm Jad Abumrad.

Robert Krulwich:          I'm Robert Krulwich.

Jad Abumrad:               This is Radiolab.

Robert Krulwich:          And we are spending the whole hour with Tampa Bay Times reporter at Kelly Benham and her husband, Tom French and the story that they're telling us its about this limbo, a space that's literally between life and death.

Jad Abumrad:               We have to tackle some really big questions. Oh the, here's an easy one. Tom, when did you decide to name your daughter [Juniper 00:37:39]

Tom French:                 About five days after she was born.

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

Kelly Benham:              Images of roses opening. And everyone's really good looking.

Jad Abumrad:               Like in an ER sort of way or-

Kelly 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?" "When is cupcake coming by?" And-

Jad Abumrad:               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 is perhaps more than any other place on earth. The physical embodiment of this limbo, the neonatal intensive unit NICU. Where they just have to wait and hope that that will or whatever it was they saw on [Juniper 00:38:43] takes hold.

Kelly Benham:              We had been like yanked out of our lives and out of everything that we recognized, yeah, you know, out of our jobs at our house and we 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 back and everyone's wearing a uniform, don't know who anyone is. And everything's like beeping and humming.

Kelly Benham:              And you don't know how long you're going to be there and you don't have any sense of time. 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.

Kelly Benham:              It was that critical.

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

Kelly Benham:              Sure blew a hole in her intestines.

Tom French:                 That was the real beginning of a lot of problems and her belly turned dark and got real distended.

Kelly Benham:              They were inserting drains-

Tom French:                 In the belly to try to drain away-

Kelly Benham:              The stool and dunk 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 Abumrad:               So in quiet moments with Tom would do

Tom French:                 Chapter one, the boy who lived.

Jad Abumrad:               Is he would stand over Juniper's incubator and he would read her Harry Potter.

Tom French:                 Mr and Mrs Gerson of number four private drive. We're proud to say that they were perfectly normal. Thank you very much.

Jad Abumrad:               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. But there is something there that she responded to. I wanted to say she liked because her, her SAT number would go high at that point. Her sat number.

Jad Abumrad:               What is that like her oxygen?

Tom French:                 Saturation of oxygen on her blood.

Jad Abumrad:               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. But then when I got deeper into the story, I read in Haggard's voice "bout it, professor Dumbledore, Sir" said the giant climbing carefully off the motorcycle as he spoke and she decided instantly.

Kelly Benham:              And the alarm just going off and going, okay.

Tom French:                 And Kelly hit me and she said, "You're scaring the baby." And I'm like, what do you, what you could see even before her eyes opened that she was really responding to what we were doing. She didn't know a chapter is, but she was in her own way, very eagerly waiting for the next chapter. And I don't know, a better way to describe wanting to be alive. Then you want to find out what happens next.

Robert Krulwich:          Unfortunately, what happens next is that

Tom French:                 One night at around two o'clock in the morning.

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

Tom French:                 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.

Kelly Benham:              We rushed to the hospital.

Robert Krulwich:          And when they get there, they were told-

Kelly Benham:              That she did it again. She got another hole in her intestines and she started to really spiral.To really go downhill.

Tom French:                 Her blood pressure and oxygen levels were crashing.

Kelly Benham:              She was on 100% oxygen. The ventilator settings were turned up as high as they could go and she was still struggling and faltering and you know, once they are giving your baby 100% oxygen, they can't give her any more.

Fauzia S:                       At that point, I had done everything that I could possibly do.

Jad Abumrad:               This is Fauzia Shaquille.

Fauzia S:                       Neonatologist at all children's hospital.

Jad Abumrad:               She was Juniper's doctor at the time. She said she'd given [Juniper 00:43:25] everything she could think of, blood pressure, medicine, antibiotics. She'd put a drain in her abdomen.

Fauzia S:                       But obviously it was not enough.

Kelly Benham:              Something was wrong.

Fauzia S:                       Terribly wrong.

Tom French:                 We might lose her at any second. The only option left

Kelly Benham:              To take her to the operating room with car open. clear the intestines, relieve the pressure.

Jad Abumrad:               How do you do a surgery on a one pound baby? Seems-

Kelly Benham:              No, exactly. I mean you know she was so extremely premature, so fragile.

Jad Abumrad:               So tiny that operating seemed kind of crazy and Doctor Shaquille began to really consider the idea that maybe this was it.

Fauzia S:                       And at that point I was at bedside looking at her-

Jad Abumrad:               Trying to figure out what to do

Fauzia S:                       And all of a sudden she opened her eyes.

Jad Abumrad:               Really?

Fauzia S:                       Yeah. She opened her eyes wide and she looked at us. Her eyes were like wide open and she was looking right at the doctor directly staring at her hard. And it was a very powerful moment.

Jad Abumrad:               Doctor Shaquille says she decided right then and there we're going into surgery.

Fauzia S:                       I think she deserves a chance.

Jad Abumrad:               Tell me more about why you made that decision.

Fauzia S:                       Well, typically babies who are that critical and they're 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 am here, I am still here. Don't give up.

Jad Abumrad:               So Dr Shaquille Summon, the pediatric surgeon told her they want to move forward with the operation, but the surgeon said?

Kelly Benham:              No. The surgeon was adamant that she did not want to do it.

Fauzia S:                       She said, it's futile and she had blood pressure so unstable that she will not make it out of the OR.

Jad Abumrad:               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 Krulwich:          That's law professor and ethicists Nita Farahany again.

Nita Farahany:              Many physicians legitimately believe that if you have a preterm infants and that infant is in serious peril of spending a life of suffering and pain-

Robert Krulwich:          And the only way to do no harm and fulfill your oath is not to do the surgery. She says, if you ask the courts-

Nita Farahany:              You know right now the law favors life.

Robert Krulwich:          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 S:                       Whenever there's life, there's hope. So this is our window we should do it now.

Jad Abumrad:               For Dr Shaquille, the argument that ultimately won the day was simply this.

Fauzia S:                       Basically what I told her was that if you think she's going to die, she is dying right now as we speak in the unit.

Jad Abumrad:               So we can either do nothing and she definitely dies or we can do something and she probably dies. But you never know.

Fauzia S:                       There is a slim chance.

Kelly 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 only gave her a little kiss on her forehead and Tom did the same thing and then they wheeled her away.

Robert Krulwich:          How long was the operation?

Kelly Benham:              It was... they call, they paged us much more quickly than we expect it to come back. So we knew something was wrong.

Jad Abumrad:               The nurse assured Tom and Kelly into a separate room.

Kelly Benham:              This little windowless conference room. And the surgeon came in and she said, you know... she was supposed to go in and clean everything out and rinse everything off and find the hole and patch it and, 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 Krulwich:          And you're hearing this.

Kelly Benham:              Yeah.

Jad Abumrad:               [Juniper 00:48:02] had survived the operation, but barely.

Kelly 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 going live till morning.

Tom French:                 I'd been really working hard to avoid thinking about all the bad things that were possibly going to happen here. Just trying to hold on, you know, and I sort of thought it was my job to do that and I'm just kind of funny, kind of stereotypically male with me.

Jad Abumrad:               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 [Juniper 00:48:46] 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 this book? What if she doesn't get to hear the ending? And you know, she never finds out. You know, what happens to Hereon, Hermione and Ron.

Tom French:                 That thought led in all the other thoughts, very difficult thoughts about all the things we wouldn't get to do with her. She would never get to know. And I had this terrible thought that, you know, she was in this incubator, this isolated this plastic box. And I had this terrible thought that she was just going to go from one box to another. And I had to pull over, you know, cause I just lost it.

Tom French:                 And at that point that wasn't maintaining anymore. There was no holding back. This flood of what was happening. And we had a rule at Kelly and I, which was that only one of us got to lose it at a time. And you know, that was my turn to lose it.

Keith B:                        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.

Jad Abumrad:               Neonatologist, Keith Barrington.

Keith B:                        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 attempt to the deaths of babies. And now that has become much less common to lose a baby. Even no miscarriages and stillbirths are now we realizing how much that hurts. And in the past, maybe we've hidden some of that from ourselves.

Kelly 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 Abumrad:               No one can quite explain it.

Kelly 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, but she's just in this box and she's gotten needles coming out of every which way and tube down her throat. She has no idea that one day, you know, she'll just be held and rocked and then we'll take her out for ice cream and she'll play with the dog. And, and I just wonder 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 Abumrad:               After the surgery, things did not get easier.

Tom French:                 She would stop breathing many times a day. Teams would rush into anything.

Kelly Benham:              Come on [Juniper 00:52:28] but come back, come back. I remember the room spinning and then she started to swell for like weeks and weeks.

Jad Abumrad:               But she continued-

Kelly Benham:              To not die

Jad Abumrad:               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 at home.

Tracey Hollis:                For some reason. When the baby's here, that word-

Jad Abumrad:               This is Tracy Hollis again, primary nurse.

Tracey Hollis:                They get sick and we just, it's a superstition obviously, but something happens and sometimes it can be devastating.

Robert Krulwich:          So what do you say instead?

Tracey Hollis:                We'll say that place that the baby's going to go when they leave here.

Jad Abumrad:               Wow, I got so tortured.

Tracey Hollis:                Sometimes we spell it, which makes no sense at all.

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 able to take her out of there.

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

Kelly Benham:              Car seats. Right? But when you're, what do 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 in his car seat and I put a little pair of sunglasses on her, cause I didn't know if her eyes would be okay in the sunlight. She'd never seen the sun.

Kelly Benham:              And we all kind of walked out and Tracy is 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 [inaudible 00:54:21]. That was totally before the gay thing. Before I stopped going to [inaudible 00:54:28] and.

Jad Abumrad:               And all in all. How long were you in the hospital for?

Kelly Benham:              Six and a half months. I was just 196 days. How has Juniper now? What is? Can you give us a snapshot of her morning?

Tom French:                 Sure.

Jad Abumrad:               Actually Tom and Kelly were nice enough to allow us to send a reporter to their house to meet her.

Robert Krulwich:          She's two years old now.

Jennifer:                      It's [Juniper 00:55:01] good morning [Juniper 00:55:06] hi

Tom French:                 That's Jennifer. Say Hi.

Robert Krulwich:          When we got there, she was still, she was just waking up.

Kelly Benham:              She not [inaudible 00:55:17] this morning .

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

Juniper:                       [inaudible 00:55:32]

Kelly Benham:              Yeah, he went to Daddy. Isn't that funny?

Juniper:                       [inaudible 00:55:45] [inaudible 00:55:45]

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

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

Robert Krulwich:          And because we were there, Juniper felt it was kind of important that we see some tricks she's learned. This is radio, so they have no idea what you just did.

Tom French:                 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 during the chair yesterday morning, by journalistic standards, nothing happened.

Jad Abumrad:               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 comes in, especially after you've been through what we went through,

Kelly Benham:              Would you come to Mommy, I'm want to kiss you.

Tom French:                 Was everything.

Kelly Benham:              I'm going to kiss you and 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.

Kelly Benham:              Okay. Can I have some more kisses?

Tom French:                 And all of the blank chapters of her life were inside that morning waiting to be written.

Kelly Benham:              Which one you want this book come here.

Jad Abumrad:               And do you feel like you're out of the woods? both Tom and Kelly said no way. And then Tom tell us about these flu shots that [Juniper 00:57:56] 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.

Jad Abumrad:               And that is, that's a real number you just said?

Tom French:                 That's a fact. They are designed to help protect her from a RSV, which is a virus that in most people just presents as a common cold. But you know, she, her lungs are still recovering and are still developing and RSV can be devastating and there are some other concerns that could still creep in down the road. Some studies have shown that kids who are born prematurely struggle more in school with reading and math.

Tom French:                 That's often, they're more susceptible to depression and anxiety.

Kelly 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 the easy 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. Like she might be okay. She is okay.

Jad Abumrad:               In case you're wondering Keith Barrington the neonatologist we spoke to earlier when we asked him how his daughter's doing. Out of curiosity, how is, how is a viola doing now?

Keith B:                        She is great. She's coming to the end of the fifth grade in school and she's perfect.

Jad Abumrad:               So we should say these are two stories of babies who made it, but in this brand new frontier of course their main stories of babies who don't.

Robert Krulwich:          A big thank you to all children's Hospital and St.Petersburg, Florida for letting us talk to pretty much everybody and-

Jad Abumrad:               And record the sounds of their queue. And thank you, a huge thank you to uh, Matthew [inaudible 01:00:35] for production help on this story and many late nights.

Robert Krulwich:          And we also recommend that if you can, you should take a look at Kelly Benhams 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 Abumrad:               Radiolab.org I'm Jab Abumrad

Robert Krulwich:          I'm Robert Krulwich.

Jad Abumrad:               Thanks for listening.

Tracey Hollis:                Hi, this is Tracy Hollis Radiolab is produced by jet Adam Rad. Our staff includes Ellen [inaudible 01:01:07], Soren Wheeler, Pat Walters Howard Ranafel, Molly Webster, Melissa O'Donnell, Dylan Kieth, Lynn Levy and Andy Mills

Speaker 2:                    with help from that fealty Chelsea pageants in Megan's. That's all.

Speaker 3:                    Special thanks to Lynn Paltrow, Jennifer Jonkers, and John Lantos and this message goodbye.