23 Weeks 6 Days

6:57Kelley Benham:After turkey baster.

6:59Tom French:IVF.

6:59Kelley Benham:Test tube stuff.

7:00Tom French:Yeah. And I never thought that it would get that far.

7:04Kelley Benham:But it would go farther because after trying IVF. Three times. That didn't work.

7:08Tom French:So they said, well, you can try it with an egg donor.

7:10Kelley Benham:Meaning you get a friend who'd be willing to donate the egg, take the egg, put it in a dish, forcefully impregnate it with Tom's sperm, then you insert the egg into your womb.

7:18Tom French: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.

7:26Kelley Benham:Kelly asked a good friend to be an egg donor. They implanted the egg. And shortly after, she took a pregnancy test.

7:31Tom French:I tested way too early, and so the line was super, super faint. Wasn't even sure I could see it at all. so I took a photograph of the pregnancy test and I put it into Photoshop and I actually had to dial up the contrast to make the line appear.

7:50Kelley Benham:That is, everything about this is so high tech.

7:54Tom French:Right?

7:55Kelley Benham:Wow, and did you see what you wanted to see?

7:58Tom French:Yeah, and I was like, oh my God, I think there's two lines there. So I waited and I did it a second time and then I told Tom.

8:11Kelley Benham:And did you go into the expectant parent mode?

8:14Tom French:Oh yeah. I touched up to paint. I patched the little holes in the wall. Everything was perfect. Everything was absolutely perfect until it wasn't.

8:31Kelley Benham:Five months into her pregnancy, 20 weeks, which is just about halfway because the full term is 40. Kelly was at a park playing with her dog.

8:38Tom French:And I just felt a little bit weird and just started to bleed. Like, not a lot, but any amount of blood is not a good thing. And I called the doctor's office and they didn't seem too concerned. They were like, yeah, you probably want to go to the hospital and get that checked.

8:57Kelley Benham:And I went to pick her up and by the time we got to the hospital she was in a lot of pain.

9:03Tom French:cramping, cramping, cramping. I knew something was really, really wrong. They got me into one of those wheelchairs and they wheeled me into the sort of triage room. And by that point, like blood was just coming out of me. Chunks of blood coming out of me. And I didn't know, I thought it was baby parts like falling out. And I thought I'm having a miscarriage. Like the baby's going to drop out on the floor. I was throwing up. And then the doctor came in and he looked scared.

9:35Kelley Benham:Does the doctor say something or what happened? The doctor explained to me quietly there was something that was making it difficult to stop Kelly's bleeding. And if they couldn't stop it, we might lose Kelly. And Kelly heard the doctor say this. And I need to tell you, Kelly is the toughest, most fearless person I've ever known. But she grabbed my arm as hard as anyone has ever grabbed my arm. And I remember just asking him, don't let me die. Please don't let me die. It was terrifying.

10:09Tom French:And then at some point they brought in an ultrasound machine to see what was going on with the baby. And I assumed the baby was long dead. I mean, I thought there were baby parts on the floor. I didn't know. And they hooked up this machine and they were moving the 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...

10:42Tom French:There it was. Just this heartbeat.

10:48Kelley Benham:This is sound she recorded on her cell phone.

10:54Tom French:Baby's heart's beat super, super fast, so it sounds like a rabbit or something.

10:58Kelley Benham:Did you just hear it on the sonogram?

10:59Tom French:Yeah, this heartbeat pops up and then there's the baby and you can see it and she looks fine. She's totally oblivious. She's just right there. So now I thought, oh my God, I'm going to watch her die. I'm going to watch her die in front of me.

11:22Tom French:And then they started just pumping me full of drugs to try to get this labor stopped. there's this drug called magnesium sulfate. And one of the effects of it is it just makes you kind of boil from the inside. But eventually they got the contraction 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.

11:46Kelley Benham:So four more weeks.

11:48Tom French:Yeah. It was almost like they drawn a line in the sand. Like you must get to 24 or there's no hope.

11:53Kelley Benham:And why 24? What's special about that number?

11:57Tom French:They told me that 24 weeks is kind of the loose definition of viability.

12:06Tom French:That sort of grew out of when they were fighting out Roe v. Wade. In Fondren versus State, for example, the court ruled that a woman who commits an abortion on herself is guilty of no crime.

12:18Kelley Benham:Okay, so here's the story as I understand it, Robert. Okay. In Roe v. Wade, the Supreme Court was trying to strike this balance. They wanted to protect a woman's right to choose, as we know. But they also wanted to say that there are limits to that right, that there is some moment in the development of the fetus in the course of this pregnancy where you cross this line and suddenly it's no longer just about the woman's rights. Now you have to think about the state's interest in the unborn child. The problem, of course, is where do you draw that line?

12:47Tom French:Now that is the million-dollar question.

12:49Kelley Benham:This is Nita Farahani. She's a law professor at Duke University.

12:52Tom French:So the kind of best guess at that point, the best medical objective standard that the justices could come up with.

13:00Kelley Benham:And this is in 1973.

13:01Tom French:Was viability.

13:03Kelley Benham:And the word viable in this case means can it survive on its own?

13:07Tom French:Yes, outside of the woman's womb.

13:10Kelley Benham:In other words, when a fetus is developed enough that you can take it out of the mother's womb and it can still survive, that, the court suggested, is the point when it is no longer okay to have an abortion. Because across that line, a fetus is, quote, viable. So then the question was, when does a fetus cross that line? When can it survive on its own?

13:31Tom French:Well, we begin, Mr. Justice, in our brief, with the development of the human embryo.

13:38Kelley Benham: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. They go like this. Three weeks. The fetus's brain and heart begin to develop. Eight weeks nerve fibers. 13 to 16 weeks the fetus begins to move and then kick. At 23 weeks, some fetuses respond to familiar sounds like a mother's voice. And at 24 weeks... Air 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.

14:16Kelley Benham:No one was testing it. No one was trying to take the fetus out of a mother at 24 weeks to see if it would survive. In fact, throughout the 70s and 80s, most hospitals, according to Kelly, drew the line of viability back a little bit farther at 28 weeks.

14:31Tom French: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.

14:46Kelley Benham:So for a long time, the actual viability line, not the theoretical one, was 28 weeks. But then, in the late 70s...

14:54Tom French: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.

15:01Kelley Benham:And that...

15:02Tom French:Combined with IV nutrition...

15:04Kelley Benham:New super small ventilators...

15:06Tom French:Moved the line of viability back to around where it is now.

15:11Kelley Benham: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.

15:24Tom French:So given modern technology.

15:27Kelley Benham:You could imagine, says Nita, one day the line could jump way back, which will make things really tricky.

15:33Tom French:If, for example, we get to the point where modern science is able to develop an artificial womb. Does viability start at the point of a fertilized egg? You know, if the standard is the point at which the developing child can actually survive outside of the womb using any technological intervention possible, that is a slippery line indeed. They said, get to 24 weeks because that's the limit.

16:00Kelley Benham:Which meant that the doctors had to pump Kelly full of drugs, keep her feet elevated for at least another four weeks.

16:07Tom French:But I just kept going into labor in and out of it, and they felt like they couldn't hold it off anymore.

16:14Kelley Benham:And at 23 weeks and four days, the doctor tells her that there's nothing more they can do. The baby is going to come in a day, maybe two.

16:23Tom French:The guy comes in, and he seems a little uncomfortable like this. It was not pleasant for him. He said, you know, your baby's probably coming in 24 to 48 hours, and we know how hard you work to have this baby, and we know how much you want this baby, and we assume that you want everything done. What does that mean? We had no idea. So we said, we're not sure if we do want everything done. Paint the picture for us, doctor. And he said, you know, there's about a 53 % chance that the baby will die no matter what we do.

16:57Kelley Benham:53?

16:58Tom French:Yeah.

16:59Kelley Benham:Whatever we do.

17:00Tom French:Whatever we do. There was a small chance that she could be fine.

17:03Kelley Benham:What were those chances?

17:05Tom French:About 20.

17:06Kelley Benham:Hmm. I felt like 20%, you know, it's not an impossibility.

17:14Tom French:It seems like a reasonable, it seems like worth a gamble until you really think about what the 80 % means. I mean, she could be on a ventilator for the rest of her life. She could have a massive bleed in her brain and it was like eat holes in her brain. and affect her ability to think or talk or walk, she could, pretty good chance she could be blind or deaf, and there was no way for the doctors to predict.

17:45Kelley Benham: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. Just let nature take its course.

18:06Tom French:And he said it would be, we should decide before the baby came. Because once the baby came, if we saw the baby, it would be really hard to say no. So if no was going to be the answer, we needed to say that before the baby came.

18:24Kelley Benham:That's the worst night ever. you're trying to make up your mind about what's right.

18:32Tom French:Like would we be torturing this baby for nothing?

18:36Kelley Benham:We didn't want her to be born and have a life that she would hate us for having. There have been instances where children with birth defects or genetic diseases have filed wrongful life suits, essentially claiming that they should have never been born. We had to really debate what was in her best interest. What would she want? I started to really struggle with whether I was being selfish, whether I had already pushed too far.

19:04Tom French: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.

19:23Kelley Benham:And...

19:23Tom French:I think I got pretty close to know. All night as we're talking this through and crying and trying to figure it out, we could hear the baby's heartbeat through the monitor.

19:42Kelley Benham:Baby was letting us know all night, I'm right here. I'm right here.

19:56Kelley Benham:But there must have been a moment where you had to say yes or no out loud. Well, we asked for a second opinion, or not a second opinion, but another consult.

20:07Tom French:We had some more questions, and a nurse practitioner from the NICU came to the room. Yes, my name is Diane Loisell. I'm a neonatal nurse practitioner. This is the next day. They had asked to speak to someone again. And instead of just citing numbers and statistics. I don't give numbers. It's different for each baby. She kind of started to paint a picture. This is what I've seen. I've been doing this 30 years.

20:30Kelley Benham:But more importantly.

20:31Tom French:I also told them that it wasn't a yes or no decision. She said, you know, you don't have to decide right now.

20:41Kelley Benham:They could have the baby.

20:42Tom French:If the baby came out crying and active, then we should do everything.

20:46Kelley Benham:for the baby. But if the baby came out blue and limp,

20:51Tom French:intraventricular hemorrhage, we could stop. We didn't have to keep going. If something goes horribly wrong, we can withdraw the support, and then you can hold your baby until it dies. But you can give your baby a chance and see how it goes.

21:06Kelley Benham:In other words, in a very real way, they could give this decision to the baby.

21:16Tom French:That same night, I was feeling like, um, just uncomfortable.

21:21Kelley Benham:A couple hours later, discomfort turns to pain.

21:24Tom French:Finally, a doctor came in and was like, yeah, you're in labor. We have to go right now. So then it was like super, super quick. Oh, our light shot in the spine cutting me open. And then, oh my God, there's a third person in this room. But not really, not quite almost. I mean, she was so, so early.

21:53Kelley Benham:What did she look like?

21:55Tom French:Well, I didn't see her then. I just saw her kind of whiz by in an incubator. And she just looked like a little dark smear in a hat.

22:09Kelley Benham:And did you make it to 24 weeks?

22:11Tom French:So we were one day shy of 24.

22:15Kelley Benham:23 weeks and 6 days.

22:24Kelley Benham:We'll be back in just a moment.

22:43Tom French:talk about how Capital One cafes are open seven days a week to assist with your banking needs. Yep, even on the weekends. It's pretty much all he talks about in a good way. What's in your wallet? Terms apply. See CapitalOne.com slash Bank Capital One N-A member FDIC. Radiolab is supported by Smalls. Did you know that some cat foods contain so much carbohydrate filler that they're closer to a granola bar than a prey animal? It's true. In fact, dry kibble can be 30 to 50 percent carbs, despite cats having almost no dietary need for them. Small's fresh recipes are over 80 percent animal protein, and they never use fillers or artificial ingredients.

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23:55Kelley Benham:What is the secret to making great toast? Oh, you're just going to go in with the hard-hitting

23:59Tom French:questions.

24:01Kelley Benham:I'm Dan Pashman from The Sporkful. We like to say it's not for foodies, it's for eaters. We use food to learn about culture, history, and science. There was a time we looked into allegations of discrimination and bon appetit, or when I spent three years inventing a new pasta shape. It's a complex noodle that you put together. Every episode of The Sporkful, you're going to learn something, feel something, and laugh. The Sporkful. Get it wherever you get your podcasts. Hey, I'm Chad Abumrad. I'm Robert Krolwich. This is Radiolab. Today, we're spending the entire hour on a single story, which we saw in the Tampa Bay Times.

24:35Kelley Benham:Kelly 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. Now, just to put that in context, if a baby is born before 22 weeks, it's generally considered a miscarriage. And pretty much no doctor is going to intervene. If a baby is born after 25 weeks, there have been all kinds of studies which show that doctors then feel morally obliged to save that life, no matter what the parents say.

25:18Kelley Benham:So before 22 and after 25, things are pretty clear. But between 22 and 25, you land in this gray zone. this strange little liminal space between life and death where you have to answer some really tough questions. Like, should my baby live? At what cost? And who gets to decide? And ultimately, when does life begin? Kelly and Tom, like many parents who land in this zone, decided that for the hardest question... Ultimately, it's up to the baby. The baby will tell them whether it's going to stay or whether it's going to go. So they delivered by C-section, and their daughter, who at that point didn't have a name, was whisked off to the neonatal intensive care unit, or the NICU.

26:04Kelley Benham:And eventually they went to see her.

26:06Tom French:And they incubated her.

26:08Kelley Benham:For the first time. And she was, like,

26:16Tom French:weirdly perfect.

26:21she had all the parts these long fingers and long feet delicate little nose and she had hair and

26:32Tom French:fingernails and eyebrows and you know all the things that they're supposed to have but she was translucent you could just see right through her you could see all the veins running under her skin you could see her heart thumping in her chest um and her eyes were sealed shut like a puppy and um she was like beat up she had bruises all over her body and she had a black eye just from the you know they were very careful with them when they're born but just that very delicate handling um kind of batters these babies because they're so fragile I mean it was like weird like I didn't know how I was supposed to feel I mean you want to believe that the minute you meet your daughter there's going to be like butterflies you know or like unicorns it's supposed to be the best moment of your life but there was so much terror inside that moment

27:32Kelley Benham:I was terrified because I love being a father my relationship with my sons is extremely important to me. And I was really terrified that she would be so alien, having been born at 23 weeks, six days, that I wouldn't recognize her as my daughter and that I wouldn't bond with her. That thought filled me with a real dread. And I went up to see her. I could see that she was only half finished, barely a pound at that point. So tiny my brain couldn't even process how small she was. And the nurse, Gwen, she said, well, you can touch her, you know. And I was stunned because I didn't think I would be able to.

28:20Kelley Benham:And so she had me, I'd already washed and sterilized my hands once and she had me do it again. And she showed me how to reach in through this little round porthole into the incubator and explained how to touch her. You don't rub the skin because the skin will come off if you do that when they're born that early. You just press gently. And so the baby was lying there, not with her fists, but with her arms extended, with her palms open. So her right palm was right there when I reached my left hand in. And I just put my left finger gently into her palm and she just grabbed on tight. and in that moment

29:08Kelley Benham:all my fears about not being able to bond with her washed away and

29:21Kelley Benham:what got to me was how I could be so afraid

29:31Kelley Benham:when she was so strong.

29:36And at that point,

29:40Kelley Benham:I just, she was the most beautiful thing I'd ever seen. And I told her, hey Peanut, it's Daddy.

29:53Kelley Benham:So that was when I met my daughter. now when a baby is this early the parents and the doctors are watching it very carefully trying to guess is this baby ready to be out in the world is it going to make it and tom says when she grabbed his finger that wasn't just them bonding he felt like she was saying something to him she made her

30:16Tom French:will very very clear the baby declared itself like declared its will to live and that was a phrase we

30:22Kelley Benham:again and again. Some babies will, if I can use the term, declare themselves over the first few hours and days of their life. That's a neonatologist we spoke to, Keith Barrington.

30:32Tom French:You get a gut feeling.

30:33Kelley Benham:And that's Diane Lozell again, the nurse practitioner.

30:36Tom French:After meeting the baby, that this one looks very fragile, or this one can do it.

30:43Kelley Benham: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 third declares itself. And here we ran into a real difference. Parents will often see will. An incredible will and resolve. Doctors and nurses. No. Not so much. That sounds a bit too mystical for me.

31:03Tom French: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.

31:13Kelley Benham:Can you see a spirit in a kid?

31:16Tom French:I think you can see some fight. I call it spunk a lot of times.

31:20Kelley Benham:That is Tracy Hullett.

31:22Tom French:I'm a registered nurse.

31:23Kelley Benham:She was Kelly and Tom's primary nurse.

31:25Tom French:At All Children's Hospital.

31:26Kelley Benham:And like everyone we spoke to on the hospital side, when it comes to this issue, she chooses her words very carefully.

31:31Tom French:I maybe try to keep things a little bit more neutral than talking about their will to live.

31:37Kelley Benham: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? Well, that's a difficult question. And the truth is, things like... Fight. Spunk. May just boil down to physiology.

31:53Tom French:Maybe that baby had a few more lung buds to start with.

31:56Kelley Benham:Maybe it had an easier time in utero. May have nothing to do with Will. In fact...

32:00Tom French: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.

32:13Kelley Benham:Because, you know, putting yourself in a parent's head, if you've got to decide how much am I going to push, how much of my heart am I going to pour into this little creature, maybe if you can see something like will or something like intention, if you see, oh, that's a person in there, or maybe if you don't see it, maybe it's the only way you've got to make this decision. As my wife, the professional ethicist, often says, we don't make important decisions in our life for rational reasons very often. Keith and his wife Annie Jean-Vier have done a huge amount of research into the ethics of extremely premature births.

32:47Kelley Benham: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 5 days. She weighed 720 grams. One and a half pounds. And she was actually in my own NICU. Oh, wow. I was actually the director of the unit where she was. So he was in his unit, in the place where he usually worked. He saw babies make it, not make it, and now suddenly he was a parent in that place. And several weeks after his baby was born, there was a very, very big complication.

33:31Kelley Benham:She actually didn't move at all for about 36 hours.

33:36Tom French:And we thought maybe it was a little...

33:39Kelley Benham:Maybe it was time. Yeah. So they decided, he and his wife, to let her go. Peacefully. But I went back into the NICU to see her. And something happened. He looked down. And he saw her lips move. Barely. She started sucking on a soother that the nurse had put in her mouth. She was sucking on a pacifier, and it was just a reflex. The most basic baby reflex, the sucking reflex. He knew that. But just that movement of sucking on the soothe... Changed his mind completely. I went back to Annie and said, we can't stop.

34:17Tom French:I really need to continue and give her the chance.

34:21Kelley Benham:But you knew that the sucking response is not... That's a fairly deep brain...

34:28Tom French:Yes, it's very basic. It's just the brain stem. And you need a lot more than be able to suck to do well. But as I say, I was trying to be the parent there and not the neonatologist.

34:40Kelley Benham:Well, could you remember if the doctor in you was surprised at the father in you?

34:45Tom French:Yeah, I think I was actually a little. Yeah, I think if I'd have been more evidence-based and rational and scientific, I could have gone either way. But just as a father, I couldn't at that point let her go. I just didn't really know how to process it. I felt like she was, I just had this very acute sense that she had just been like violently ripped out of my body and I could feel where they had cut her out, you know? And like, I just wanted to put her back and make her safe, you know?

35:25Kelley Benham:Yeah.

35:26Tom French:And I had all these questions going through my head, like, you know, like how long does she have to live for us to get a birth certificate for this to be real like i felt like she might die and and like it wouldn't count and i wouldn't be a mother you know what i mean and and like what if she died like what would happen like would we have a funeral do they make caskets the size of shoe boxes i mean all these like it's so screwed up that that's the stuff you think about but your brain goes places you just can't control or predict um and if she i wondered like if she knew was she really aware that i was even standing there like was it just a reflex that made her grab my finger and when she grabbed it did she know did she know i was there and if she didn't know i was there did she wonder where i had gone and did she feel alone and is she scared

36:30Kelley Benham:all she could really do at that point was sit with those questions

36:35Tom French:and it just became this waiting game

37:07Kelley Benham:We'll continue in a moment.

37:25Tom French:minimums. He'd also talk about how Capital One cafes are open seven days a week to assist with your banking needs. Yep, even on the weekends. It's pretty much all he talks about in a good way. What's in your wallet? Terms apply. See CapitalOne.com slash Bank Capital One N-A member FDIC. This episode is sponsored by BetterHelp. You know something I would like to wake up tomorrow and be better at, speaking another language. One of the things that holds me back is, you know, feeling vulnerable that I'm going to mess up my pronunciation or how I look in front of other people or getting something wrong.

38:04Tom French:And so in the process, I get self-conscious and I cut myself off and I don't end up speaking the language at all. So I actually get worse, not better. Getting better at something is a feeling defined by you. And for BetterHelp, it's a BetterHelp therapist who really gets you. It's a focus on global emotional well-being with thousands of therapists and millions of members in over 100 countries. It's progress. Sign up and get 10 % off at BetterHelp.com slash Radiolab. That's BetterHelp.com slash Radiolab.

38:40Kelley Benham:What is the secret to making great toast?

38:42Tom French:Oh, you're just going to go in with the hard-hitting questions.

38:46Kelley Benham:I'm Dan Pashman from The Sporkful. We like to say it's not for foodies, it's for eaters. We use food to learn about culture, history, and science. There was a time we looked into allegations of discrimination and bon appetit, or when I spent three years inventing a new pasta shape. It's a complex noodle that you put together. Every episode of The Sporkful, you're going to learn something, feel something, and laugh. The Sporkful. Get it wherever you get your podcasts. Hey, I'm Jad Abumrad. I'm Robert Krelwich. This is Radiolab. And we are spending the whole hour with Tampa Bay Times reporter Kelly Benham and her husband, Tom French.

39:22Kelley Benham:And the story that they're telling us? It's about this limbo, a space that's literally between life and death. We have to tackle some really big questions. Yeah. Although here's an easy one. Tom, when did you decide to name your daughter Juniper? Hmm.

39:40Kelley Benham:About five days after she was born. Now in those five days, pretty much everything in their lives changed. I mean, on the most superficial level, they began their hospital stay day zero in the maternity ward, which had butterflies on the walls.

39:53Tom French:Images of roses opening.

39:58Tom French:And everyone's really good looking.

40:01Kelley Benham:Like in an ER sort of way?

40:03Tom French:Like in a Grey's Anatomy kind of way. We had one super hot nurse. We called her Cupcake. And she had this glossy hair. and, you know, people would visit me and they'd be like, hey, is Cupcake here? When is Cupcake coming by?

40:16Kelley Benham: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 care unit, the NICU, where they just have to wait and hope that that will, or whatever it was they saw in Juniper, takes hold. We had been, like, yanked out of our lives

40:48Tom French: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 even look like babies, you know? there was one baby that had his intestines you know outside of his body like piled up on his belly like in his bag and everyone's wearing a uniform don't know who anyone is and everything's like beeping and humming and

41:28Tom French:and you don't know how long you're going to be there and you don't have any sense of time like day and night don't mean anything and you know we're sort of dimly aware of the sun rising and setting out the window. But other than that, it's just like minute to minute, hour to hour. You're afraid to leave even for an hour to get some lunch because the baby could die.

41:52Kelley Benham:You know, if we went home to get some sleep, would she die?

41:56Tom French:I mean, it's that critical.

41:57Kelley Benham:And she had roughly five, six days that went pretty well. and then that next weekend

42:09Tom French:she blew a hole in her intestines.

42:12Kelley Benham:That was the real beginning of a lot of problems.

42:15Tom French:And her belly turned dark and got real distended.

42:19Kelley Benham:They were inserting drains in the belly to try to drain away

42:25Tom French:the stool and gunk and she just had this little straw sticking out of her belly.

42:31Kelley Benham:And then they couldn't maintain her blood pressure So I was thinking of everything I could do, because you don't want to feel powerless in a situation like that. You want to feel like there's something you can do. So, in quiet moments, what Tom would do... Chapter one, The Boy Who Lived. ...is he would stand over Juniper's incubator, and he would read her Harry Potter. Mr. and Mrs. Dursley of number four, Privet Drive, were proud to say that they were perfectly normal. Thank you very much. They were the last people you'd expect to be involved in anything strange or mysterious. As I started reading to her, and as the days went on, she has no idea what I'm reading, right?

43:08But there is something there that she responded to.

43:12Kelley Benham:I wanted to say she liked because her SAT number would go high at that point. Her SAT number, what is that, like her oxygen? The saturation of oxygen in her blood. Tom says that number on the monitor was one of the only ways that they could get feedback about how she was doing because her eyes were still closed. There'd be times when she wasn't moving around a lot. The higher the number, the better. And he says when he would read to her, her numbers would go up. Not just slowly, but instantly. But then when I got deeper into the story, I read in Hagrid's voice, Borrowed it, Professor Dumbledore, sir, said the giant, climbing carefully off the motorcycle as he spoke.

43:51And she de-satted instantly.

43:55Tom French:And the alarms were just going off and going off and going off.

43:58Kelley Benham:And Kelly hit me and she said, you're scaring the baby. And I'm like, what? You could see, even before her eyes opened, that she was really responding to what we were doing. She didn't know what a chapter is, but she was, in her own way, very eagerly waiting for the next chapter. And I don't know a better way to describe wanting to be alive than you want to find out what happens next. Unfortunately, what happens next is that one night at around 2 o 'clock in the morning, On a rare night that they actually went to sleep at home, they get a call from their doctor. And his first question was, how far do you live from the hospital?

44:39Kelley Benham:And, you know, that's not a question you want to hear from your child's doctor.

44:42Tom French:We, like, rushed to the hospital.

44:43Kelley Benham:And when they get there, they were told...

44:46Tom French:That she did it again. She got another hole. Another hole in her intestines. And she started to really spiral. And really go downhill.

44:58Kelley Benham:her blood pressure and oxygen levels were crashing she was on 100 oxygen the ventilator settings

45:04Tom French:would turn up as high as they could go and she was still struggling and faltering and you know once they are giving your baby 100 oxygen they can't give her any more at that point i had done

45:13Kelley Benham:everything that i could possibly do this is fauzia shakiel neonatologist at all children's hospital she was juniper's doctor at the time she says she'd given juniper everything she could think of blood pressure medicine antibiotics she'd put a drain in her abdomen but obviously it was not

45:27Tom French:enough. Something was wrong.

45:29Kelley Benham:Terribly wrong. We might lose her at any second. The only option left?

45:33Tom French:To take her to the operating room and cut her open. Clear the intestines. Relieve the pressure.

45:38Kelley Benham:How do you do a surgery on a one-pound baby? It seems...

45:40Tom French:Oh, exactly. I mean, you don't. She was so extremely premature. So fragile.

45:47Kelley Benham:So tiny that operating seemed kind of crazy. And Dr. Shaquille began to really consider the idea that maybe this was it. And at that point, I was at bedside looking at her. Trying to figure out what to do. And all of a sudden, she opened her eyes. Really?

46:13Tom French:Yeah. She opened her eyes. Why? And she looked at us. Her eyes were like wide open and she was looking right at the doctor. Directly. staring at her hard. And it was a very powerful moment.

46:34Dr.

46:35Kelley Benham:Shaquille says she decided right then and there, we're going to surgery.

46:39Tom French:I think she deserves a chance.

46:41Kelley Benham:Tell me more about why you made that decision.

46:43Tom French:Well, typically babies who are that critical, 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 was a very powerful statement that I'm still here. I am here. I am still here. Don't give up.

47:11Kelley Benham:So Dr. Shaquille summoned the pediatric surgeon, told her they want to move forward with the operation, but the surgeon said...

47:18Tom French:No. The surgeon was adamant that she did not want to do it. She said it's futile and her blood pressure is so unstable that she will not make it out of the OR.

47:33Kelley Benham:And the surgeon told her, even if I could open her up and do the job, her skin is so papery that I might not be able to sew her back up.

47:40Tom French:There are guidelines that medical industries have, even basic things like the Hippocratic Oath of do no harm.

47:46Kelley Benham:That's law professor and ethicist Nita Farahani again.

47:49Tom French:Many physicians legitimately believe that if you have a preterm infant and that infant is in serious peril of spending a life of suffering and pain. And the only way to do no harm and fulfill your oath is not to do the surgery. But.

48:07Kelley Benham:She says if you ask the courts.

48:09Tom French:You know, right now, the law favors life.

48:13Kelley Benham:The courts have seen very few cases that involve disputes like this. But in everyone so far, she says, they've supported the person who's arguing to keep the child alive.

48:23Tom French:Whenever there is life, there is hope. So this is our window. We should do it now.

48:28Kelley Benham:For Dr. Shaquille, the argument that ultimately won the day was simply this.

48:33Tom French:Basically, what I told her was that if you think she's going to die. Well. She is dying right now as we speak in the unit.

48:41Kelley Benham:So we can either do nothing and she definitely dies or we can do something and she probably dies. But you never know.

48:47Tom French:There is a slim chance. So they're wheeling the incubator with the baby in it. And I'm holding her little hand. And she's getting ready to go into surgery. And she was looking right at me. And she hadn't done that before. I mean, it really seemed like she was aware that I was there very clearly. And she was locked on my face. So I gave her a little kiss on her forehead. And Tom did the same thing. And then they wheeled her away.

49:14Kelley Benham:How long was the operation?

49:17Tom French:It was, they paged us much more quickly than we expected to come back. So we knew something was wrong.

49:28Kelley Benham:A nurse ushered Tom and Kelly into a separate room.

49:31Tom French:This little windowless conference room. And the surgeon came in and she said, you know, she was supposed to go in and clean everything out and rinse everything off and find the hole and patch it and do all these things. and she said when she cut the baby open and touched the baby's intestines with her little probe she's the way she described it was everything fell apart it was just falling apart and falling

49:55Kelley Benham:apart when you're hearing this yeah juniper had survived the operation but barely so we're thinking like okay this was an incredibly risky surgery and we just put her through it for nothing and

50:12Tom French:I thought there was no way that Babe was going to live till morning. I'd been really working hard to avoid thinking about all the bad things that were possibly going to happen here.

50:23Kelley Benham:Just trying to hold on, you know, and I sort of thought it was my job to do that. And just kind of funny. Kind of stereotypically male of me.

50:35Kelley Benham:And Tom says they were in the car around the time of the surgery. as we're driving. 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?

51:02Kelley Benham:And, you know, she never finds out, you know, what happens to Harry and Hermione. and Ron, that thought let in all the other thoughts, very difficult thoughts about all the things we wouldn't get to do with her, that she would never get to know. And I had this terrible thought that, you know, she was in this incubator, this isolette, this plastic box, and I had this terrible thought that she was just going to go from one box to another.

51:37and I had to pull over you know because I just lost it and at that point I wasn't maintaining

51:44Kelley Benham:anymore there was no holding back this flood of of what was happening and we had a rule Kelly and I which is that only one of us got to lose it at a time and you know that was my turn to lose it

51:57Tom French: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.

52:07Kelley Benham:And working so hard to save babies is very new. Neonatologist Keith Barrington. In evolutionary history, newborn babies very frequently died.

52:18Tom French:And most parents who have any significant number of children had lost one or two or three or more. and in order to be able to carry on with your life and to provide for the rest of your family we had to be able to adapt to the death of babies and now that it's become much less common to lose a baby even miscarriages and stillbirths and now we're realizing how much that hurts and in the past maybe we've hidden some of that from ourselves. No way the baby was going to live till morning. but what happened was really strange she continued to just not die

53:05and the next day she you know she was still there the surgeon was surprised and no one could quite explain it the more i thought about it the more

53:18Tom French:I found it like surprising and interesting, you know, because she doesn't know that there's a better place, you know, that she's just in this box and she's got needles coming out of every which way and tube 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 and i just wondered like what is she fighting for

54:00Tom French: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

54:15Kelley Benham:After the surgery, things did not get easier. She would stop breathing many times a day. Teams would rush in to...

54:24Tom French:Come on, Jimbo, come back, come back. I remember the room spinning.

54:28Kelley Benham:And then... She started to swell for like weeks and weeks. But she continued...

54:34Tom French:To not die?

54:35Kelley Benham:And she began to gain weight. And, you know, nurses are very superstitious, a lot of them. They won't say the word home.

54:42Tom French:For some reason, when the babies hear that word...

54:44Kelley Benham:This is Tracy Hullett again, primary nurse.

54:46Tom French:They get sick, and we just... It's a superstition, obviously, but something happens, and sometimes it can be devastating.

54:55Kelley Benham:So what do you say instead?

54:57Tom French:We will say that place that the baby's going to go when they leave here.

55:01Kelley Benham:Wow, my God, that's so tortured.

55:03Tom French:Sometimes we spell it, which makes no sense at all.

55:05Kelley Benham:But after about four and a half months, Diane, that nurse practitioner, told us that we might want to think about buying a car seat. That was the first inclination that we might be able to take her out of there. That's the first time I've ever imagined a choir of angels singing around mention of car seats.

55:28Tom French:Car seats, right? But when you want to have a baby really bad and everybody else has a baby but you and you can't have a baby, things like shopping for car seats become like fantasies. And finally, the doctor gave the all clear and we took the monitors off of her and she was completely free and untethered, not hooked to anything. and we strapped her into this car seat and I put a little pair of sunglasses on her because I didn't know if her eyes would be okay in the sunlight. She'd never seen the sun. And we all kind of walked out and Tracy's really not a hugger, but we like grabbed her and hugged her and cried all over her shirt.

56:15Tom French:And then we put the baby in the car and we went to Chick-fil-A. We went to Chick-fil-A. Yeah. That was totally before the gay thing and before I stopped going to Chick-fil-A.

56:26Kelley Benham:And all in all, how long were you in the hospital for?

56:29Tom French:Six and a half months. It was 196 days.

56:35Kelley Benham:How was you to Brunel? Can you give us a snapshot of her morning? Sure.

56:44Kelley Benham:Actually, Tom and Kelly were nice enough to allow us to send a reporter to their house. To meet her. Good morning.

56:52Tom French:Good morning.

56:53Kelley Benham:She's two years old now.

56:55Tom French:Hi, good morning Callie. Hi. It's Junebug.

57:01Kelley Benham:Good morning Junebug. That's Jennifer. This is Jennifer. Say hi. When we got there she was still in bed, she was just waking up.

57:13Tom French:She's not being very cuddly this morning. We're slippy.

57:22But then she just sprung up

57:25Kelley Benham:jumped out of bed and took off

57:29Tom French:Where's Tomba? Daddy Yeah he went to daddy Is that funny?

57:44Come on

57:45Tom French:Show me where the kitty is

57:51Tom French:I know you want to give the kitty a hug

57:59She's kind of your typical two-year-old

58:07Kelley Benham:And because we were there, Juniper felt it was kind of important That we see some tricks she's learned

58:20Yay! Perfect!

58:25Kelley Benham:Good somersaults.

58:26Tom French:You know what, though? This is radio, so they have no idea what you just did.

58:30Kelley Benham:Good somersaults. You know, it's interesting because as journalists, again, we spend a lot of time chronicling sometimes very terrible things. and what's interesting is that yesterday morning by journalistic standards nothing happened you know we need to do is change your diaper it was it was it was wouldn't even be on journalistic radar but what you know as a parent especially after you've been through what we went through

59:06Tom French:If you come see mommy, I'm going to kiss you.

59:10Kelley Benham:Was everything happened.

59:13Tom French:I'm going to kiss you. Nothing you can do about it either. Are you ready? What?

59:17Kelley Benham:Everything happened yesterday. In that couple hours. The entire world was contained inside that morning.

59:24Tom French:Can I have Eskimo kisses?

59:27Kelley Benham:And all of her... All the blank chapters of her life were inside that morning. Waiting to be written.

59:37Tom French:Which one? You want this book? Come here.

59:42Kelley Benham:And do you feel like you're out of the woods? Well, um... Both Tom and Kelly said, no way. And then Tom told us about these flu shots that Juniper gets. They're not just flu shots. They're like flu shots, like super flu shots. And there's four shots you get. And I swear to God, they cost$14 ,000 for those four shots. and that is that's a real number you just said that's a fact that's a fact they are designed to help protect her from uh rsv which is a virus that in most people just presents as a common cold but you know her lungs are still recovering and are still developing and rsv can be devastating and there are some other concerns that could still creep in down the road some studies have shown that kids who are born prematurely struggle more in school with reading and math.

1:00:34Kelley Benham:That's often they're more susceptible to depression and anxiety. But I will say that we took her to visit a preschool the other day.

1:00:44Tom French:And we took her there and set her down and she just took off and like went up to these giant children and started taking their toys. And they were singing the wheels on the bus. and you could see it in her eyes. I know that song. And she didn't care about Tom or I one bit. You know, she was totally there with those kids and she was so ready. And I thought, wow, she might be okay.

1:01:18Tom French:She is okay.

1:01:31Kelley Benham:In case you're wondering, Keith Barrington, the neonatologist we spoke to earlier, when we asked him how his daughter is doing, out of curiosity, how is Violette doing now? She's great. She's coming to the end of her first grade in school, and she's perfect.

1:01:54Kelley Benham: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.

1:02:08Tom French:So, Pat here again. That was 2013. It's 2026 now. And re-listening to this, I wondered, like, how's Juniper doing now? So I texted her mom, Kelly, and she wrote right back and said, you should ask her. Is she going to be gay? Well, probably. Maybe. Her dad, Tom, and her little sister brought her over to a studio in Indiana near where they live to chat with our producer, Anissa and I. Yeah. Hi. Hi. Well, thanks for talking to us.

1:02:42Kelley Benham:Of course.

1:02:43Tom French:Yeah. How's your day going?

1:02:46Kelley Benham:It's going good. I got picked up during math, so I'm very happy about that.

1:02:51Tom French:You got picked up during math?

1:02:52Kelley Benham:Yeah. We weren't really doing a lot. We got you out of school.

1:02:56Tom French:So Juniper is 15 years old now And when we called her She was about to finish 8th grade

1:03:02Kelley Benham:So you're going to high school next year Yeah Oh my god Are you excited? I'm in between I'm nervous But excited at the same time Excited for new friends And a new school And new classes But I'm also nervous To leave my friends That are a year behind me or they're going to a different high school, so I'm not excited about that.

1:03:27Tom French:Juniper says school hasn't been a very easy place for her.

1:03:30Kelley Benham:Yeah, kindergarten, school, eighth grade. Didn't really go as fast as I would want it to. I was just super lonely. I mean, it's kind of hard for me to make friends.

1:03:43Tom French:And some of that, she says, had to do with what she went through as a baby.

1:03:47Kelley Benham:I mean, I'm super small. Some kids tease me about it. Like, I'm taller than you, and, you know, you're two years older than me and stuff. But, I mean, look at small bars. You know, she's super tall. You look at the stuff she can do.

1:04:00Tom French:And besides being smaller than the other kids in her class, Juniper says the only other physical thing that she has to deal with is a kidney condition.

1:04:08Kelley Benham:I mean, I love salt, but I can't eat too much of it, and that really annoys me.

1:04:12Tom French:What's actually been harder is the emotional side of things.

1:04:15Kelley Benham:I have to deal with PTSD, even though I was so small I can't really remember. But, you know, it still affected me in a lot of ways.

1:04:23Tom French:She's struggled with anxiety, controlling her emotions.

1:04:27Kelley Benham:But the thing is, I don't really think about it a lot, you know? I don't really think about how being a micro-premier has really affected my life. You know, I just live my life like a normal human being, and I don't really think, oh, yeah, I have this crazy story to tell. And, you know, I was born blah, blah, blah this early.

1:04:47Tom French:So what does your life look like outside of school? What are you most into?

1:04:55Kelley Benham:Horses, horses, horses, horses.

1:04:58Tom French:Juniper says a few years ago her mom started taking her to this barn.

1:05:01Kelley Benham:Stone Creek Ranch, which is 30 minutes away from our house, and I fell in love.

1:05:10Kelley Benham:I feel like the horse, for me, is like a best friend. It teaches people, especially me, how to control my emotions because when you are angry or mad or frustrated, then that inflicts on them, and so they act out, they lash out. So I have to learn how to be calm. You know, it makes me let go of all my anger, and I can just be free, I mean, just ride.

1:05:45Tom French:And working with the horses has helped Juniper make a lot of people friends too.

1:05:50Kelley Benham:There's Natasha, a color auntie.

1:05:53Tom French:A bunch at the ranch.

1:05:54Kelley Benham:My instructor, Jen. They're like a second family.

1:05:57Tom French:And also at school.

1:05:59Kelley Benham:Yeah. I spend most of my time with my two best friends, Mina and Katie. We just have fun. I'm really proud of how far I've come. You know, I went from, you know, having no friends, being super lonely to having all these bunches of friends and best friends, you know, and I'm really proud that I can be myself with them, you know. I mean, it's really special. And I mean, my mom, you know, she described how she wanted her daughter to be. And, you know, it's the person she described is me, you know. I'm loud. I ride horses. I love to sing at the top of my lungs, but I sound terrible. That is me. Yeah.

1:06:42Kelley Benham:Yeah.

1:06:47Tom French:23 Weeks, Six Days was produced by Jad Abumrad and Matt Kilty. And the update was produced by Anissa Vitsa. Kelly and Tom wrote a book about juniper that came out in 2016. It's called Juniper. It's fantastic. We'll put a link to it on our website. and also on our website, Kelly sent us a bunch of pictures of juniper riding, which are very impressive. So all that's at radiolab.org and on our Instagram at radiolab. Thanks for listening. We'll see you next week. Hi, I'm Jonquil and I'm from Brooklyn. And here are the staff credits. Radiolab is hosted by Lulu Miller and Latif Nasser. Soren Wheeler is our executive editor.

1:07:36Tom French:Sarah Sandback is our Executive Director Our Managing Editor is Pat Walters Dylan Keefe is our Director of Sound Design Our staff includes

1:08:06Tom French:and Jessica Young, with help from Gabby Santos and Maya Appleby-Malamed. Our fact checkers are Nora Bell-Glidia, Hilary Elkins, Rachel Gross, Diane Kelly, Emily Krieger, Natalie Middleton, and Sophie Samayi.

1:08:24Tom French:Hi, I'm Aubrey, calling from Salt Lake City, Utah. Leadership support for RadioLap's science programming is provided by the Simons Foundation and the John Templeton Foundation. Foundational support for Radiolab was provided by the Alfred P. Sloan Foundation.

1:09:05Tom French:a week to assist with your banking needs. Yep, even on the weekends. It's pretty much all he talks about in a good way. What's in your wallet? Terms apply. See CapitalOne.com slash Bank Capital One N.A. Member FDIC.