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Season 11 | Episode 6

23 Weeks 6 Days

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Juniper French in the NICU Juniper French in the NICU (Cherie Diez)

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. 

Guests:

Kelley Benham, Nita Farahany, Tom French and Diane Loisel

A Future You Can't Control

Technology has had a profound effect on how we get pregnant, give birth, and think about life and death. The decision to become parents was not an easy one for Kelley and Tom. Even after they sorted out their relationship issues and hopes for the future, getting pregnant wasn't easy. ...

Comments [10]

A Declaration

Kelley and Tom had hoped that meeting their daughter would be the happiest moment of their life. But when she came early -- at just 23 weeks and 6 days, that moment was full of terror and an impossibly difficult decision. And when the time came to face it, Tom ...

Comments [4]

Waiting for Life to Begin

The Neonatal Intensive Care Unit, or NICU, is a land of emotional and medical limbo. Kelley, Tom, and their daughter Juniper got stranded in this limbo for months, fighting to survive, and finally get to the next chapter of their lives. Their doctor, Fauzia Shakeel, describes the moment when Juniper's ...

Comments [9]

Comments [219]

Melissa from Tallahassee, FL

I want to know how much it cost them to keep a baby in the NICU for that long. Did they have insurance? Was it out of pocket? That's probably over $200,000 worth of medical care.

Mar. 31 2014 04:45 PM
Dana

I think Bonnie's comment was pretty poignant. Is it a moral use of resources to keep these children alive? I have wondered this a lot myself this past few weeks as my 24 weeker sits in the NICU. We want her more than anything and we've spent a decade trying to have her, but it's hard to grapple with the fact that the cost of her care could vaccinate a hundred thousand children in Africa. She's probably our last chance at having children, and adoption (especially if you are not religious) is a far, far more difficult feat than Bonnie's comment suggests. Christians give ther children to Christians and Muslims to Muslims, but atheists and Humanists only reproduce when they intend to.

Feb. 05 2014 09:03 AM
John S from New Zealand

Congratulations on this gripping, moving episode. It had me on the 'edge of my seat' throughout and in tears several times. Thanks to the parents who shared what they went through. You reminded me that there are deep, deep feelings and connections coming from that tiny human that are beyond the clinical tools of the ICU. The power of nature is mind-blowing! Isn't there some sort of Pulitzer award for great radio journalism like this?

Jan. 02 2014 10:56 PM
Bonnie from Missoula, MT

I was disappointed in the lack of discussion of the morality and ethics of creating and keeping alive a baby that Mother Nature was whole-heartedly against. Isn't it apparent that a couple not being able to get pregnant the natural way is Nature's way of saying that our world is already too populated, that we're ruining the world enough and that, no, you two cannot create another life? Furthermore, how many hundreds of thousands of dollars were spent on creating and keeping alive this new life, money that could have gone towards the adoption of babies already living and viable? What is the carbon footprint of the baby in this story, I wonder? I found it interesting, and rather shocking, that someone in the story at one point wondered if they should just let nature run its course and let the baby die. Too late for nature here. A baby created in a test tube and kept alive by various machines and through numerous surgeries is unnatural. A selfish and costly experiment, indeed.

Jan. 01 2014 10:47 AM
Susannah from NY

I gave birth to twins at 23 week, 6 days -- one was stillborn, the other with a very tiny chance at life. Our pregnancy, which started naturally, soon became extremely medicalized, as the doctors discovered an errant placenta (TTTS). Only 10-20 yrs earlier the babies would have been considered a loss, but our medical team pushed full steam ahead. The pregnancy was kept going - against it's natural course? It's a moral question. But the moral question was ultimately left to us when one baby quietly expired at 23 weeks, and the other was left alive in utero. But now we understood that her chances were poor -- death or a vegetative state, following months in the NICU were what lay ahead for her. Her chance at even getting by with just a moderate disability were extremely low. And yet, and yet, she was alive. Like this couple, we had 2 days to decide, as "viability" was looming close. It was excruciating. In the end we decided that enough had been done to her, and that we wouldn't play a role in putting her through what we saw as a torturous way to enter the world. We had the labor induced and I gave birth to her (and her stillborn twin) at 23 wks, 6 days. She was born alive and knew only the warm love of her parents' arms. She lived for an hour and a half in my arms. Officially, this was considered a late-term abortion. I feel that we did the right thing, but I often think back to that time --especially when I see a parent with a severely disabled child. Did I do the right thing? Should we have given her yet another chance? Or had we done too much already? It's a question that I think the medical world should explore closely before they push pregnancies into artificial territories.

Nov. 21 2013 11:36 AM
Fertilitynewyork

omg!!! What a challenging issue, never heard of it before. Is it the ok or any problem the baby will face outside???

Nov. 06 2013 06:09 AM
Breanna from Washington DC

never before have I heard a story so close to my own. My son was born at 24.6 weeks. Weighing 1 lb 8 oz, I have never been more afraid before or since. For me, the pain of waiting months to hold him in my arms sent me into hysterics at the end of every busy. Myles is now 12 years old. In perfect health. The story of his birth feels like a personal miracle. Thanks for sharing this one too!

Oct. 29 2013 09:34 AM
Andy

I think what Eric from Omaha is touching on is the fact that in situations of great uncertainty and import the human instinct is to tell a story with clear reasons and a clear narrative, even despite our wanting also to be truthful about the great extent to which we may lack both understanding and control. But (we want to say) this is how we are wired to understand things! Senses and stories are our go-to tools, and frankly, why Radiolab is so effective at giving us human pathways to understanding difficult and abstract material! But it's a double-edged sword: what we may gain in clarity/control (we feel better), we lose in accuracy (our answers seem wrong). One can see how some parents with dilemmas (and there are lots, and they are all different) that have no clear outcome or ending or handle to understand them would not be comforted. For another personal perspective on these issues (not so neat), interested folks might check out the book "Holding Sylvan, A Brief Life" by Monica Weselowska, an account of the struggles the author and her spouse went through with their firstborn child. (Thanks for the shows, Radiolab crew!)

Oct. 24 2013 01:14 PM

This was the most bizare story, both in terms of your reporting and in terms of the people involved. A person who can't get pregnant, then carries someone else's egg, and then her body reject the fetus. Wouldn't it make more sense for the guy to have had sex with that other woman whose eggs that came from? The tremendous cost for this baby vs. the number of babies uncared for around the world is a whole other story. I hope I am not paying for her selfish desire.

Oct. 20 2013 11:55 PM
Satya Cohen

Beautiful piece! As a mother to a 24.6 week old baby boy, who is now 18 months old a thriving , this hit home in a big way. It's not something you can understand unless you have been a NICU parent, this was so real and honest and heartfelt. I recall with such clarity that day before our son was born and having those same discussions with the Neonatologist about what we were going to do giving how our son arrived into the world. We too asked for another Dr before delivery and then another, as questions came up and fear turned to anxiety. Thank you for airing this piece.

Oct. 20 2013 12:07 AM
Michael from Houston, TX

I've been a long time listener of Radiolab and this is the first time I feel like you have strayed way off course on a show. What happened to science? This was an incredibly unbalanced program of the 'miracle' of life that should have been left to 'The View' and other daytime talk shows. How about discussing all the signals nature provided the couple that they shouldn't reproduce, but they chose to ignore? Maybe discussing the money spent to support this vanity project? Or how many children there are out there who need a home, a family?

I hope by the time your show comes here to Houston you won't have me regretting the decision to watch and support your program.

Oct. 07 2013 11:13 AM
Mark

I need to say that this episode made me cry, and I don't cry often. I was heading to a bar to meet my friends as I was listening to it. It was hard for me to get out of the car when I arrived. I had to rush back to the car and leave my friends. I sat there listening to the story. I study occupational therapy and this show renewed my passion to work with people who face disabilities, trials and tribulations.

Oct. 06 2013 11:00 AM
Joan Smith

I would like to concur with the many commenters who felt that this episode lacked enough hard science. The connection made between "viability" for abortion laws and the date of birth of the baby was disgusting, and seemed only present to further the cause of anti-choice activists, who would prefer to force women to have unwanted children. A story about the survival rates of premature babies, and what factors influence that, besides the flimsy "will to live" that was discussed endlessly, would have been interesting. A story that compared rates of infant mortality, with hard numbers, across time, would have been interesting. This story was fluff. If I'd wanted to hear about the miracle of sick babies, I'd go to religious services. I come to Radiolab for science, and this story was virtually science-free.

Oct. 01 2013 02:54 PM
Eddie Coleman Jr from High Point,NC

this was one of the most powerful examples of courage,faith & humanity i have ever heard on public radio.don't know i cried more throughout or at the glorious ending.thank you for helping me refresh my belief in the best of my humanity.

Sep. 30 2013 10:42 AM
Young from Hanover,MD

My son 9 years old and I was listening your story 9/28/13 while drive around Baltimore area. It was very powerful strong story. Thank you for sharing your story. I am very happy for both of you for wonderful result. I was very moved while hearing the story on radio.

Sep. 30 2013 01:53 AM
Anastasia

As a mother of a 23-weeker, thank you for the story! Having my baby so early turned my whole life around. It is important to talk about the possibility of having a preemie to pregnant mothers but doctors do not do it. Although we cannot change the course of things, the parents' lives can be preserved with more awareness on the matter.

Sep. 29 2013 11:53 PM
KCB

Like a punch to the gut, this episode hits close to home. It's my alternate reality. My "that could have been us," my "oh god, we came so close. So close."

I landed in the hospital at 24 weeks to the day in preterm labor with my son, nearly 8 years ago. My body wanted him to be born 16 weeks early. I was a few centimeters dilated and something told my body that, inexplicably, it was his time to be born. Magnesium sulfate, terbutaline, weeks in the hospital, months on strict bed rest at home, untold fear, anxiety, sadness, and an early lesson in how you have to give up all control as a parent, we, somehow, somehow, made it to almost 37 weeks before he came. How? Why? Who knows how my body was able to hold on to him for that long. He came two days shy of full term and we brought him home from the hospital two days later. He's perfect. He's healthy. He's a miracle. But all babies are miracles, aren't they? I'm not religious, haven't really reconciled whether or not I believe in a higher power, but I know he's a miracle. All babies are. I'm convinced of that.

Why me? What would our lives be like if he came that cold, dark night?

We came so close. So very close.

Sep. 29 2013 11:33 PM
sharon mason from wnyc

I would like several copies of the radio broadcast that was aired on 9-28-2013 on npr about kelly Benham and her husband's journey through her preg. ,delivery, and following months after Juniper was born. It was excellent. Thanks.

Sep. 29 2013 10:13 PM
Scott Currie from Bloomington, IN

I am becoming increasingly disappointed in Radiolab, guys. I love you, and I want you to do better!

I agree with some of the comments above (I admit I couldn't read all of them) that a lot of interesting science based stories were ignored in favor of emotional appeal. This episode boils down to couple wants baby, maybe they can't, then they do, but it's sick, then it isn't, everything's ok!

If I want to hear that story, I'll watch Pinocchio.

The gray area between life and death? Why not talk about animals that freeze solid during the winter and somehow remain alive? A discussion of what we mean by alive and dead, bearing down hard on the facts like a diamond tipped drill.

I want a return to the days of phantom limbs receding to weird fingerlets, stories about the woman who could spin around and forget where she was and songs about bio-engineers. Instead it seems to be all stories of how praying JUST MIGHT cure rabies and how babies are the most magical thing in the world.

I don't want to change the channel. Don't change it in front of me.

Sep. 29 2013 10:01 PM
Victoria Taylor from Kentucky

For those who commented about Far Right or Right to Life agenda, "sentient fetus" (how horrible a term! I guess you have never felt a baby kick in your womb!), the "line" seems very clear. But when it is your unborn baby at risk or your life, the line seems to be more firm. How hypocritical to judge this couple's decisions. There are many more things at play here than scientific facts. Feelings and promptings must be listened to and heeded. God bless the doctors who push the line and give more parents and babies hope. And, what is a perfect baby? Do we get rid of all people who are not perfect?? Talk to most parents of a less than perfect child and see what they have learned about compassion, service, love. Talk and observe a handicapped person and learn about strength and determination from them.

Sep. 29 2013 09:56 PM
tkwerz9 from Baltimore

Dan, I don't mean to be offensive or insensitive. If you knew me, you'd know it couldn't be further from the truth. I'm sure you obtain care for your children when they're sick, even when there are other children whose parents can't. For any parent making a life or death decision for their child, I can't imagine that the primary criterion would be "How much will this cost?" or "How many vaccinations would this pay for?". Our first instinct is to ask, "What can we do for my child?" I've come to terms with my choice to sign a DNR for my first son; I feel vindicated that I gave my second son the chance to fight for his life.

I'm not going to debate about abortion, nor will I judge whether a childless adult should try to conceive or adopt. I agree that there are grey areas; that's exactly why drawing a line concerns me. The line moves simply because we push it. We need to make progress to provide good care to all. Limiting care won't solve inequalities in healthcare. The doctor who performed the experimental procedure to repair my aneurysm was Canadian. Because he was from a country with national healthcare, I asked for his thoughts on the then-pending vote on the Affordable Care Act. He answered, "Well, if we were in Canada, I wouldn't have been allowed to do this procedure." I'd be dead.

Thank goodness for the angels who fund research. We have a long way to go to make healthcare available to everyone, but I hope that it's the best this country has to offer.

I'd love to wave a magic wand and solve the world's problems - health care, housing, starvation, poverty in general - but it's complicated and I am just one person; I do what I can. As a musician, I have volunteered in a fundraiser for UNICEF. I have two nieces in the healthcare "industry"; one works on an Indian reservation. I've volunteered at local food banks. My favorite charities include Healthcare for the Homeless (again, I challenge everyone to contribute), Habitat for Humanity, South Baltimore Learning Center (fighting adult illiteracy), and, of course, with much gratitude, March of Dimes. How many babies can we vaccinate if we divert funds from daily lattes, luxury SUVs, and unlimited data plans? What are our priorities?

I don't have all the answers and that's why I like this broadcast. It reminds me of the same questions I asked myself with my two sons. I don't see it as a catalyst for debating national healthcare or as a platform for pro-life advocates. It IS about the heart-wrenching decisions that parents must make for their children and their caregivers face on a daily basis. It hit close to home for me and brought back memories of very difficult times.

I am buoyed by every happy ending!

Sep. 29 2013 07:35 PM
Deborah from Brooklyn

In contrast to the number of listeners who were disappointed in the lack of hard science in this episode, I had an amazing experience listening to this. While most Radiolab episodes explore the ways in which science can counter and explain our instinctive/emotional experience of the world, this one simply inverted that formula. Because, truly, there are still some things about life that science currently fails to fully account for or explain. Those are the things that make us human. I want to be as willing to accept the current limitations of science to fully explain life as I am willing to admit that there are ways in which science provides full explanations.

The important thing, to paraphrase Einstein, is not to stop questioning. Why is it that there are children born who thrive under identical circumstances to those who struggle forever, or simply die? Where does the personhood of an individual begin or end? How do we make decisions on the behalf of others (not just infants or the unborn--but so many many others) when we are in a position of even limited power to save them? And science does fit into this, although sometimes in ways that are grey and not clear-cut.

I think this is one of the more important episodes I have heard. Because it presented so many more questions than answers. And that, in my mind, is the real role of science. It is an ongoing exercise in humility and acceptance of limitation and ignorance, even when couple with the excitement of discovery and the illusion of true insight and clarification of the workings of the universe.

Sep. 29 2013 06:27 PM
katrina schu from Tucson

I listened, horrified, to your whole program, waiting for some talk of the ethics of using millions of dollars and untold care hours and expertise on this small child when thousands of mothers in this country and millions more around the world have not even the basic pre and post natal care. Shame on you for giving this the whole hour. The catastrophic costs this couple incurred I suppose are paid for by those of us who carry health insurance. How much better to be providing what should be normal pediatric/maternal care to those in need.

Sep. 29 2013 06:21 PM
Dan

tkwerz says, "I suppose that Dan would be even more appalled at the quarter million dollars spent to remove my pituitary tumor from my brain and repair a life-threatening aneurysm."

That's a completely invalid argument. There is a difference between non-sentient fetuses and fully sentient people. To deny that would be to say that we must ban all abortions, that doctors need to automatically save all fetuses, and that parents should be given no say in these situations. Either be intellectually consistent, or acknowledge that there are grey areas here.

You seem to think it is an abhorrent thing to have limits to medical treatment. Unfortunately not everyone is as well off as you are, apparently, but for people who aren't so well off, that happens every single day. People with insurance are routinely denied coverage of certain procedures, drugs, etc.

I understand you are personally involved with a preemie child, but this is a conversation that society needs to have and taking knee-jerk offense simply because you are personally involved doesn't change that. I will repeat what I said earlier, that as technology advances, a line needs to be drawn somewhere. I didn't say the line was here, but it has to be somewhere. Medical resources are finite. It is simply impossible for every single person to be able to get all the most advanced treatments that are available in the world at all times.

I hope that tkwerz doesn't find himself/herself being uninsured again and dying from a toothache or from lack of basic health care. Because tkwerz takes offense at "drawing a line" language, but the reality is, he/she has drawn a line. He/she is essentially saying, "I should never have any type of limit on any type of medical treatment, because as long as I get what I want out of it, that's all that matters." But eventually, that will lead to more and more people being priced out of the insurance market and dying from lack of access to basic health care, and only a small group who has access to every single magical-rainbow-unicorn medical treatment available on the face of the earth. That is the line that tkwerz has drawn, and I find that offensive and insensitive.

Sep. 29 2013 12:57 AM
sean from 08901

i listened in dribs and drabs to today's show and had to step away during the next to last part. but caught the very last part.

thanks for the happy ending. have a good long life, juniper junebug!!!!!

Sep. 28 2013 11:49 PM
Paula from Rocky river Ohio

What an incredible story! I had to actually pull over
To listen to it all. I wept and rejoiced many times
In that hour. We'll done and unforgettable.

Sep. 28 2013 10:14 PM
katie from Vancouver WA

This was a beautiful story beautifully told.

Sep. 28 2013 08:26 PM
tkwerz9 from Baltimore

I listened to this today on WYPR in Baltimore. It brought back memories of my son who was born at 23 wks 5 days almost 15 years ago. What I remember is the completely irrational optimism I had from the moment he was born. I knew that he would be just fine. It was especially irrational because I had made the heart-wrenching decision to sign the DNR for my first son born just one year earlier at 22 wks 5 days. The memory of holding him in my arms for hours waiting for him to die was still fresh. No one at my hospital born earlier than 24 weeks had ever survived. But when he first held my hand - reflex or not - there was an instant connection and my inner soccer mom instincts kicked in; I started to cheer for him. I believe that my son knew I was pulling for him somehow. His vitals improved each day as I arrived; most days his alarms went silent. The staff in the NICU gave every child the same incredible care. Some babies pulled through and some didn't.

To Dan, who wrote, "...this story raises general questions of where we draw in the line in terms of medical intervention and the associated costs. As technology continues to advance, we as a society have to draw the line somewhere." My son's medical bills came to about $120K. That included three months in the NICU, surgery at Hopkins to save his eyesight, hernia surgery, and RSV vaccinations at $1640/mo once he left. As I sit here watching my honors student working on his English essay, I think that it was worth sitting for hours on end, day after day, week after week, month after month, reading stories, singing songs, letting him hold my hand.

I suppose that Dan would be even more appalled at the quarter million dollars spent to remove my pituitary tumor from my brain and repair a life-threatening aneurysm. I think my son thinks the money was well spent. Yep, I'm truly lucky to have health insurance, but I've known what it's like not to have it when you need it, too. People die from starvation, too, but I'd guess that Dan feeds his family regularly. I hope no one ever makes a choice for Dan about how much is too much to keep him alive.

Dan, it sounds as though you may be truly concerned about health care for your family and your employees. As for the "millions more Americans ... who can't afford health insurance", perhaps you should consider making regular donations to organizations like Healthcare for the Homeless.

I enjoyed today's broadcast. I am surprised at the negativity in some posts and the hints that this story has hidden agendas, but each of us looks at life from different perspectives based on our own experiences. It reminded me how fortunate I am to have had my tiny fighter come into and stay in my life, that I have a roof over my head, and dinner on the table. I see this story as a family in awe and gratitude of the good fortune bestowed on them. A story where science doesn't necessarily explain the outcome. I am happy for them.

Sep. 28 2013 07:27 PM
Candy Campbell from San Francisco area

As a NICU nurse for 23 years, I can attest to the fact that this debate over the ethics and efficacy of 'when to draw the line and pull the plug' will continue. The one variable that has stayed fairly constant is the ~ 24 week limit on fetal maturity and (NICU assisted) viability. Let's face it- no matter what the reason for the premature birth, there is no easy choice in the matter. In fact, this issue disturbed me so much, that in 2000, I went back to school to learn filmmaking, so that my research about the developmental difficulties surrounding these children could be known to the world. The result, an award-winning documentary film ("Micropremature Babies: How Low Can You Go?") is available for downloading for pennies in order to raise awareness, give hope, and spark dialogue.

I'm pleased that RadioLab has included this story to highlight the suffering of all concerned. I found it to be neither pro-life or pro-choice---only a narrative illustration of the reality of of what approximately 500,000 families a year will endure in some form or another.

This is truly a "brave new world" we live in, and premature infants are our tiniest new 'minority group'.

Sep. 28 2013 05:36 PM
Iola from Texas

Sarah from New York, I don't usually comment on what others say, but I had a tiny cousin named Sarah who would be at the right age to graduate from a master's program this year. She was born at 26 weeks in the late 1980's. At this time, 26 weeks was considered the very limit of viability. Survival at 23 weeks was not considered, especially without severe cognitive problems. The interventions necessary to sustain extreme premies and aid lung development, etc were still being developed or had not yet been discovered. I find this kind of comment to be insensitive to the families that lost these early babies decades ago, many of whom could now be saved.

Sep. 28 2013 05:34 PM
J's Mom

I too had a "selfish" high-risk pregnancy. My son was conceived via IVF and a donor egg. I developed pre-eclampsia and he was born 12 weeks early and spent 4 months in a NICU. The health care costs, as some have already written about, were astronomical.

But can someone tell me which kinds of pregnancies are not selfish. We all decide to procreate for selfish reasons: We want to be parents; We want our DNA to be passed on, etc. . . Or we conceive of a child by accident, which is not only selfish, but also careless.

No one chooses to have a premature baby. And plenty of babies, born to young, healthy parents, end up in the NICU as well. It is something that no one expects or can predict. Think about this when you are being judgmental . . . and hope and pray that you never find yourself in a NICU facing these kinds of ethical issues. It's easy to be so opinionated when it's not your life.

Sep. 28 2013 05:17 PM

Yay Radiolab! I want a Cupcake!
(Is Cupcake around?)

Sep. 28 2013 05:05 PM
Brian Hanner from WKSUland new Philadelphia OH

Thank you Radio Lab for this excellent production. As a father of two young children and a funeral director who cares for the families of these young angels, I was moved by your sensitive reporting. Well done.

Sep. 28 2013 05:01 PM
Paul from Miami

I got the answer from the original articles:

"Babies born earlier than 28 weeks' gestation require an average of about $200,000 in medical care by age 7, said Dr. Norman J. Waitzman, an economist at the University of Utah. Waitzman worked on a major study in 2006 that put the cost of preterm birth in the United States at more than $26 billion per year.

The statements that arrived almost daily from our insurance company told another part of the story. It appeared that the neonatologist cost about $1,900 a day. A month in the NICU — presumably room, board and nursing care — was billed at between $200,000 and $450,000. Then there were the costs for surgeries, lab work and specialists. All together, Juniper's care cost more than $6,000 a day. The statements would add up to $2.4 million, of which the hospital collected from the insurance company a negotiated rate of $1.2 million.

Waitzman said Juniper's bill sounded typical for a baby born at 23 weeks. But because so few babies are born that early, their bills, however staggering, barely register in the big picture.

A study by bioethicist John Lantos and colleagues showed that 90 cents of each dollar spent in the NICU goes toward the care of kids who survive. This is true even for the tiniest babies. By contrast, most of the dollars spent on the elderly go to patients who die without ever leaving the hospital. The NICU, Lantos argues, is a bargain compared with adult intensive care, because dollars spent there buy many more years of life."

It was paid for by a Blue Cross/ Blue Shield policy from work "where he taught at Indiana University. Our health plan came with no deductible or lifetime cap."

Way better spent on the young than the old but still a big gamble on an iffy outcome. IMHO

Sep. 28 2013 04:08 PM
Pat from Minnesota

I'm shocked by some of the comments here from those who saw dollars and cents rather than the miracle of Juniper.

For those of you who celebrate this life, there are pictures of Juniper online. Google "Juniper" + "radio lab." Sweet!

Sep. 28 2013 04:02 PM
Frances Zimmerman from San Diego CA

I thought this program was pornographic in its extreme detail about a horrific experience and an inhumane response to it.

Sep. 28 2013 04:02 PM
Dolores from Knoxville, MD

Seems to me it's a very personal choice how to deal with a baby Juniper. This baby is one story, exquistely told. But, I recognize other parents may not be able to "hold" on to their preemie as these parents did in spite of all the odds. Thanks Radio Lab for a story well told.

Sep. 28 2013 02:48 PM
judy from NJ

Just heard the program broadcast this afternoon.

What's lost in the long string of comments stretching back for months is the notion of "playing God", which is at the heart of everything here---BOTH in a person's agonizing decision to end the life of a fetus for whatever reason AND in medicine's ability to produce pregnancy in women whom nature--and God, if you believe--tells repeatedly they cannot bear children.

If it goes against nature to terminate a pregnancy, isn't, by extension, creating life in petri dishes using a donor's egg also going against nature?

Would RL have considered touching on these broader existential matters in their broadcast? No. The producers chose to resort to emotional-drumroll plot reversals and mini-climaxes every chance they could, making "heroes" out of people who were just walking blind and happened not to stumble off the cliffs in their path.

A BIG disappointment, RL. And I'm a sucker for heartfelt stories. Just ones with more nuance.

Sep. 28 2013 02:43 PM
Paul from Miami

HOW MUCH WAS SPENT, FROM START TO FINISH?

Can any medical personnel take a guess? Between trying to get pregnant and keeping her alive and probably future medical expenses. The $14,000 flu shots are probably just a drop in the bucket.

I you want to go to extraordinary measures to have a child, fine. You should be able to have all the children you can pay for. Or, talk the doctors and hospitals into donating their time and money to see if they can keep beat the odds. I am all for Obamacare but we really need to get serious about end of life talks. Just because we can doesn't mean we should.

Sep. 28 2013 02:25 PM
Sarah from New York

I was born at 23 weeks and weighed a pound and a half. I am an ivy league graduate and currently pursuing a masters degree in social work. Many of your comments have deeply offended me. I realize that I am the exception and not the rule in many of these situations, but who are you to judge others situations? How can you claim that preemies will suffer insurmountable hardships as they grow? Finally, how can you argue that "a line must be drawn" when intervening to save a life. I am pro-choice and believe that every woman ought to have a right to choose. However, this is a different matter entirely. This couple desperately wanted a child. I apologize for the unstructured format of my response--I am simply too incensed by your insensitivity and narrow-mindedness.

Sep. 28 2013 02:05 PM
Nathan from 07030

Listened to this one a second time today (it aired on WNYC today) but originally earlier this year and I have to agree with the commenters that Radiolab really failed this time. The story is great, but the science, psychology and elucidation I expect was missing completely. I wish you had explored the boundary between feelings, perception, and science over this situation - how being amazed at the baby looking at them likely means nothing, asked my adoption was not an option, and so on...I am particularly worried about shallow examination of the lives premature baby have.

Dont get me wrong, it is a touching story, but I expect more here.

Sep. 28 2013 01:03 PM
Dan

First off, let me say I am extremely glad this couple ended up with a healthy, beautiful, long-awaited daughter from this ordeal.

However, this story raises general questions of where we draw in the line in terms of medical intervention and the associated costs. As technology continues to advance, we as a society have to draw the line somewhere. Where? I don't know.

I'm a small business owner, and I'm seeing health insurance premiums for my family and my employees soar drastically year after year, to the point where we've had to downgrade from worse to even worse plans. There are millions more Americans (including millions of children) who can't afford health insurance at all. And as a result, tens of thousands of people die every year because of lack of access to even basic health care. I remember news from a few years ago about an uninsured kid who died from a toothache because his mom couldn't afford the $80 for a tooth extraction.

As technology continues to advance, how much cost becomes too much to save one individual, generally speaking? I don't know, and it's a difficult question, but one that we as a society must address eventually, when faced with rapidly escalating healthcare and health insurance costs.

Sep. 28 2013 09:39 AM
eleniNYC from Jackson Heights

After having listened to the greatest melodrama ever in a very long time, especialy for RL; and having read the experiences of many of the posters who have not only had the misfortune of having to experience this very event in their own lives but also, who should have been considered for the "balanced" typical outcome of preemie. A preemie who, survived absolutely insurmountably imposible odds -- by medical standards or by any standard. THis child is doing somersaults and running. Why because the parents did one extra thing by reading HARRY POTTER. OR even worse they stayed at the hospital longer implying they loved their child more which is why the child lived.
I beleive this story is a hoax. Why? --- in order to push the agenda of the Far Right on Right to Life agenda. But worse this story is an indictment against parents and families who made the heartwrenching choice to allow their preemie infants to die, which is probably the most loving and selfless choice a parent can make regarding the future and highly probable compromised quality of life their child faces if forced to live. That child would NEVER EVER have a normal life. THe child would indeed have learning diabilities, but that is almost the luckiest outcome at best.
Usually preemies of that magnitude [23 wks, 6 days] IF they survive, require a lifetime of skilled nursing and that's if they are somewhat functioning and possibly able to speak and have sight. What if they lose all their sensory abilities? Then what? What life is that for a child? Will reading HARRY POTTER reverse that? I wonder when they wanted to believe when the baby was "staring at them" because they believed she wanted to live --preemies can't focus at all nor can full-term healthy babies-- Is it possible the parents misread that stare. If the baby was "looking at them" as the parents claim it's just as easy to interpret the "stare" as something else. Maybe the baby was really telling them "please let me die in peace my future is dire". I would be curious to know who this child really is, and if by chance she is real. what her life will be like 5yrs from now when she's in school.

Sorry this is so choppy. I'm supposed to be finishing my Lesson Plans

Sep. 26 2013 10:05 PM
chad

Congratulations on your selfish high risk pregnancy and all of its costs and risks. You asked yourself if you were being selfish. Should've asked that when your original Dr. told you that you could not easily get pregnant, and threw that advice away to pusue your own selfish course.

Sep. 26 2013 08:22 PM
FNG from Sactown, CA

the way the story was presented is artful because the piece was able to evoke comments both negative and positive.

I think they did a great job producing it.

Sep. 26 2013 02:32 AM
franca from us


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Sep. 21 2013 08:53 PM
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Sep. 21 2013 06:18 PM
James A from Atlanta, GA

I thought the episode was very disappointing. I prefer the science oriented Radiolab episodes, not This American Life lite. I think they missed the opportunity to explore the extraordinary costs associated with prenatal care.

Sep. 20 2013 11:37 AM
Lucia Benstein from Toronto

Interesting issues. I judge not, but there are a few items that have entered the lexicon (along with "a fighter", "declare" ) which prickle my sensibilities whenever I hear them.

"Meet the baby" has now overtaken "see the baby" when an invitation is extended for first-time encounters with a newborn. Meeting implies a convergence and communication and while I'm sure many will argue that there is a level of that happening with babies, it still doesn't sit well with me. Especially since most newborns are sleeping at the time.

While I was not bothered as much as some by the emotional tenor of this podcast, I'll agree with those that said more attention and care should have been given to not imply that the baby was doing more than just surviving.

And in addition, addressing the phenomenon of our strong impulses of wanting/needing our genes to continue to further generations, which may explain the Dr's emotional attachment to the grasp reflex in his own preemie.

Sep. 16 2013 02:15 PM
Dick from Sweden

Amazing story, I cried my eyes out.

Sep. 14 2013 06:03 AM
Christian Bergeron

I haven't listened to the podcast yet. I just wanted to comment on the choice of the expression "they got pregnant", which we see more and more. This doesn't make sense to me. I've got five kids, and I was and still am very much involved in every aspect of raising my children. But it was my wife who got pregnant and gave birth to them. I would never think of saying "we got pregnant"... To me, it somewhat belittles the role of the woman.

Sep. 12 2013 09:50 AM
Andrew from Australia

Wow, I finally caught up with this podcast and was moved to come online to tell you how much it affected me. I have been stunned by so many negative comments.
This was a story, a narrative beautifully told. Yes it pulled heartstrings, that's what made it so moving.
And no it did not ignore the science. In most cases it was the parents own words that acknowledged that their baby could not really see them or intentionally grasp their finger. But they wanted to believe that she could because that is what parents do in that situation.
As a doctor and a father I just wanted to say congratulations on producing such brilliant, moving radio.

Sep. 08 2013 05:43 AM
5CornerED from Upstate NY

I listened to this episode while I was staying at the hospital bedside with my 19yr old son "M", who coincidentally was born at 26 weeks, with his fraternal twin brother "J".
I wasn't there at the birth, I didn't meet my wife until the boys were 3. But I believe that the parents suffer from some sort of PTSD when this happens, because I suspect that fighting for your child's life for 4 months has as much stress as a tour in Iraq.
This episode didn't touch on the need for ongoing care of both the child and parent.

Aug. 25 2013 04:42 PM
Nicole from nyc

First What If There Was No Destiny...now this. One-sided (weirdly pro-life?) sob-stories with no value other than...what, I don't even know. Saving babies? Devoid of science. Like, when baby opened its eyes for the first time and "stared" at them, um, actually, the baby almost certainly couldn't see a damn thing.

I swear ever since Jad got the McAurther Genius Award, this show has turned into Sappy Story Hour. I expect more.

Aug. 22 2013 11:35 AM
Joe from Washington DC

I'm a little late to the party, having only JUST got to listening to this episode this morning, but I just HAVE to put down how I feel about it:

Radiolab has never turned off its emotional component completely (as well it shouldn't) but THIS was really too much.

I thought this was a show dedicated to showcasing science as the foundation of all our experiences. This episode COULD ave been about how the psychology of human emotion causes us to do things we thought we'd never do. OR it COULD have been about the field of neonatal medicine, and how it's redefined our ability to have a family against HUGE odds.

But it wasn't. All that talk about "finger grabbing" and "staring at mom and dad" and "she was so strong" was inexcusably manipulative.

You ignored every bit of SCIENCE you could have introduced into a SCIENCE program.

I am sorry for the hardship this couple went through. I'm sorry for people going through it every day. But there is something to be said about what they experienced other than a bunch of platitudes about little Juniper being "a fighter".

I'm not giving up on you, Radiolab. But this was the first episode I had to force myself to finish.

Aug. 07 2013 04:11 PM
Christina from Seattle, WA

My biggest concern with this story is the fact that only one outcome was discussed. Here was have a description of two very premature babies, each with the same outcome - life with minimal/no complications. RL does allude to the fact that these are statistical anomalies, and as other readers point out, the likelihood of this happening is really a miracle. Unfortunately, due to the availability heuristic, listeners are likely to come away with the belief that a miracle baby is a much higher likelihood.

Though it would have made for a much more grim story, it would have been appropriate to (also) hear a more typical story - parents whose baby did not survive or whose baby survived with tremendous complications, or parents who elected not to use all medical means necessary.

I lost my beautiful baby at 21 weeks due to cervical "incompetence". I was told that my body would most likely go into labor within 24 hrs, and that my child faced nearly insurmountable odds. Every MD I consulted told me that, if in the same situation, they would elect to induce labor and end both mom and baby's suffering. I elected to do this, and my baby knowingly did not survive. I wrestle with guilt over this decision every day, and frankly, this RL episode only heightened that grief by highlighting a miraculous case that is a statistical anomaly. What brings me comfort is listening to the *actual data* on what would have almost certainly happened had I tried to postpone labor, go on bedrest for weeks, and spend tens of thousands of dollars (and weeks of heart-wrenching uncertainty) in the meantime.

Aug. 07 2013 02:54 PM
Sarah

"Radiolab is a show about curiosity. Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience." -- from "About Radiolab"

Unlike many other commenters, I found this episode to be a thought-provoking exploration of when the boundaries blur between science and human experience, thus fulfilling rather than going against the mission of Radiolab. Yes, the episode raises some troubling questions and issues that go partially or sometimes entirely unexplored. However, there is no claim that the episode is objective or exhaustive.

Also, looking at some of the other comments, the story and its message clearly are very powerful to some. So, why not just skip this episode if it doesn't appeal to you rather than attacking what is clearly a great program?

Aug. 06 2013 02:21 PM
Joshua

As a former scientist (by trade; I still consider myself to be a scientist at heart) I found this episode to be beautiful rather than irresponsible.

The producers carefully noted that children will often die during treatment, can suffer long-term damage, and will sometimes even regret their parents' decision to keep them alive. They made no implication that Juniper emerged unscathed — her parents (and Juniper herself) won't know the lasting effects for some time. When decision points were presented throughout the program, there was no implied judgment as to what the "right" decision was — indeed, it was made clear that there is no right decision, as the medical and moral factors are too complex. Juniper's parents made emotional decisions, and the producers manipulated our emotions in concert with that, but that's how these decisions are made. To sanitize the situation for the listeners would be to present us with only part of reality. That may appeal more to technocrats, but it shouldn't appeal more to scientists.

Presenting a couple that decided to terminate care, or a couple for whom extraordinary care ended up badly, would have added balance to the episode. But should journalism always strive for perfect balance? Just the act of editing for balance implies judgment — judgment that the balance point is somewhere in the middle of the presentation. Better, I think, to present statistical facts as they are along with a few peoples' personal experiences, without any warranty. Give the listener the opportunity to be a good enough scientist to consider with appropriate skepticism. One shouldn't need to remove the human aspect of all of the N=1's in a population in order to achieve that skepticism.

Aug. 04 2013 09:36 PM
Colin Warnes from Fresyes

This one hit home for me...my son Lucas was born at 27 weeks. I must admit that you guys went a little over the top to tug at our heart strings...but overall it was a good episode. I'll never forget watching the sat monitor for his oxygen levels. I chronicled the whole experience on a blog at http://niculuke.blogspot.com/. Medicine is cool. Keep up the good work.

Jul. 31 2013 11:23 PM
Carol from Austin, Texas

I was interested from the beginning, when the program said it would explore the horrible decision parents sometimes have to make - to try, at all costs, to save their pre-term baby or to let their baby go. I was disappointed when the entire story focused on two simple cases in which the babies survived and recovered fully.

The program did not fully explore the question. There was one sentence about the possible complications with a pre-term baby, but that one sentence did not do justice to the emotional, medical and financial complexity of the situation.

I am sensitive to this topic because, when I was 20 weeks pregnant, my Ob high-risk specialist asked my husband and I to be ready to answer this question. I can't imagine a more difficult question. Our doctor explained it using a sports metaphor - "We need to know if you want to do a full court press."

The results of a full court press could be...
- The baby continues to develop and recover. (The scenario represented by your stories.)
- The baby survives with serious medical complications that impact the potential for his life and the potential future for the family. Some complications require professional nursing care, significant equipment, a dependence on Medicaid and a limit on how much the parents can work combined with very significant bills to pay every year.
- A baby that struggles for many months, with one or both parents loosing their job to be at the baby's side, insurance maxing out leading to crippling debt, depleted savings, 401Ks and more. Then the baby dies. Our doctor said this one is the hardest for him to see, when a family looses everything, when the baby had only a 0.01% chance of surviving in the first place.

I met a woman who told her doctors "full court press" at many points during and after her daughter's birth. Due to complications, her baby was without oxygen for a significant time and she was born blue and unresponsive. The doctors got her back, but the brain damage was severe. The girl can't see, hear, eat, walk or talk. She has only a vague awareness of her surroundings. She also has no automatic responses like blinking or swallowing. She has to stay at home at all times. She has to have 24-hour nursing care, because someone needs to remove the saliva from the back of her throat every few minutes, 24 hours a day, to keep her from drowning.

The topic can only be fully explored when the stories of parents who lived through the other possible results are also shared. Your approach to the story left the impression that only selfish and heartless parents would give up on their baby. That isn't true. Only when you share the complete story will people understand the full gravity of the question.

My husband and I were lucky. We didn't have to answer the question since I stayed pregnant until 31 weeks and our baby girl was small, but healthy. But I will never question another family's choice when faced with this question. I can't think of a more difficult decision.

Jul. 29 2013 05:43 PM
Jan

Just some comments on some comments...

This is not something you choose, it’s something uncontrollable that happens to you and your baby. It is only possible to make an informed decision when you know the fact, and we don’t even the doctors can only guess, only God knows. It is not something anyone else can understand not even those close to you. Even years later, little things.... they just don’t understand how fragile these little ones are. So much more I can say, best we can do is support each other.

Jul. 28 2013 05:28 PM
Phil from Oregon

I am questioning my Radiolab support. This piece was irresponsible and inflammatory on so many fronts, but most importantly, it promotes anecdotal emotional evidence in place of facts. On a science program. Was this intended as an ironic trap story to show how easy it is for emotions to cause illogical decision making? If not, it is a disservice to scientific discussion.

Jul. 25 2013 04:43 PM
Tammy from FL United States

I was in tears listening to this story. My heart goes out to this family and I'm so glad that they got to bring their baby home and she's alive and well.

My husband and I went through a similar situation with our son, Aidan. He was born with no walls in his heart due to complications from Down Syndrome combined with a genetic heart defect that affects the valves in the heart. He lived for 4 months and 21 days before passing away after surgery. I totally when she said she was afraid to go home because that might be the night that she died and they might not be there. We had to make the decision to turn the machines off on my son and that's one of the hardest decisions a parent can make and only those who have been there can understand. And to those of you passing judgement in the earlier comments we were not too old to have a baby, we were 22 and 23 years old, we are not drug users, I did not drink, and he was conceived naturally although I don't think that should matter. Sometimes fate is just beyond your control.

I wish the family all the best in the future.

Jul. 18 2013 11:32 AM
Mars from Kansas City

Shouldn't have listened to this at work! I am on the verge of tears this whole time. Beautiful story. Beautiful life.

Jul. 16 2013 02:31 PM
Juniper from Santa Cruz, CA

It was startling to hear the baby's name, I -never- hear my name on the radio! Excellent choice :-) Given their admiration of Harry Potter, her parents may be pleased to know that Ginny Weasley's full name is Ginevra, which means "Juniper" in Italian.

Jul. 15 2013 07:52 PM
Victoria

I don't understand why adoption isn't a good enough option for parents who have high level of difficulty conceiving..you'd think after the drugs, turkey baster, ivf and then finally egg donor, she would realize that maybe, just maybe her body wasn't healthy enough for pregnancy? I'm not saying I disagree with getting help to conceive, however when a couple needs this much they should think about other options. I'd like to know why people push so hard to have a child through science when there are soooo many babies out there that need homes. I also agree that this was kind of a one sided episode.
I am sorry to hear about the parents turmoil and happy that their child made it through.

Jul. 10 2013 01:03 PM
Natasha from www.suite994.com

Thank you for sharing this amazing story.

My firstborn son was born prematurely (PPROM) at 23 weeks and 4 days (the last ultrasound showed him +4 days, so 24 weeks and 1 day). The hospital where I was being cared for, a General Hospital with no NICU, said they would not resuscitate him after he was born. He lived for an hour and a half. All we could do was wait for him to die. There isn't anything worse than helplessly waiting for your baby to die.

I went on to have a second son this year with the help of cervical cerclage and over 30 weeks of strict bedrest. Liam's little brother would not be here if it weren't for cervical cerclage, a lot of medication, high risk doctors, and being confined to a bed for his entire pregnancy. I am forever thankful for the doctors and science and everything that helped me become a mother to a living child.

Jul. 05 2013 08:53 AM
eiaboca

"If these people had lived 100 years ago, they simply wouldn't have had a child. Gross."

Wow. If we'd all lived a hundred years ago we'd be dying of cholera and TB, and women wouldn't be able to vote. What's your point? I really don't get all the "they are being selfish" hate, or the Luddites among the freaking Radiolab (!) listeners. Are people being selfish when they get new health treatments to survive cancer or other diseases? What, exactly, constitutes "selfishness" on their part? Wanting a child? What is gross about that?

I am about as pro-choice as you can get, but I think that means really being pro-*choice.* If someone chooses to have a child, it is none of your business. I get that health care is a social issue, but deciding wat medical treatments are ethical for others is not a part of that issue.

I'm sorry I keep commenting! I guess I am fired up about this issue. Thanks for inspiring passion in your listeners.

Jul. 05 2013 12:47 AM
eiaboca

To Eric: Science can have an emotional component, because science is made up of human beings working. Sure, over years and generations it might get a bit washed out (the emotion), but it can never be totally removed--it directs funding and hypothesis generation and who gets to be an authority about what. It's part of who we are and part of our search for knowledge. And that doesn't make the knowledge any less true.

To staylorx: Really? Because they decided to include the protagonist's political opinion the show is not for you? You can't listen to something if the creators disagree with you? That's just silly.

Jul. 05 2013 12:40 AM
eiaboca from NYC

I mentioned this within one of the sections, but it's so important I want to say it again: the dichotomy of emotion and reason is likely a false one. They co-evolved; they cannot exist inside of us without the other. It may be that there can be intelligence in the universe that does not have emotion, but we have no evidence of that as yet, and it certainly is not the case for us.

Emotion was likely selected for just like our reasoning capabilities. So there's absolutely nothing "irrational" about reacting to instinct with emotion, and even using that emotion in our decision-making processes.

Antonio Damasio is a neuroscientist who has studied emotion extensively. His ideas (and other scientists studying emotion, of course) might be a good show topic!

Jul. 05 2013 12:32 AM
Maikata

A year ago I birthed my son at just over 23 weeks due to preterm labor that also started around 20 weeks gestation. This decision about resuscitation or comfort care while the fetus/baby passes was one my partner and I had to make too.

I had worked with teenagers and adults with severe developmental and physical delays. Some had never spoken a complete sentence or taken a step. "If that's the life for my son," I told the doc at the prebirth consult, "it will be a good life."

Some act as though full information would make the decision easier or better. I agree to a point -- we grabbed all the information we could. I read blogs. Most of the babies died before 3 months. But don't ever have full information. Not for any child. And I wanted to see my son's life unfold, however short or long it might be.

Some have noted that the parents in this radiolab were selfish in their decision to keep the child. I've worked with parents of disabled children. The most self-less thing you can do is offer the child life. It will come at a direct and life-long "expense" to you. The NICU experience will fade, but the parent of the disabled NICU graduate will devote his or her life to helping that child develop as fully as possible, enjoy life as fully as possible, whatever that new "normal" might be. And that takes energy and resources and digging down for a new sort of love.

My child will not be disabled. Not in any way we can see at this point. But that's beside the point.

To respond to comments about health care costs: I worried, too, about the health care bills. Others have mentioned this as a "selfish" thing that the parents used so much health care money to save this child. I won't speak to IVF, as that wasn't my experience, but I will say that I was relieved to hear that the beginning of life cost of care for even these smallest of micro-preemies was actually CHEAPER than the end-of-life cost of care of most adults.

So, those who hear this and think that health care is all messed up and people spend too much, take heart. You have control over the one thing that will help keep costs down more than changing policies for micro-preemies. We can all sign our own DNR. That'll save our system a lot.

In the end, I am grateful for a system that protects the most vulnerable children and adults. It is humane. It points to a world that values life more than productivity.

Want to hear more of my thoughts? Life lessons I've learned on twitter @momofa23weeker

Jun. 28 2013 04:21 PM

I'm still bothered by this episode but don't let that be a measure of how insightful it was. I'm embarrassed that the thing that bothers me the most, the thing that has almost entirely turned me off of public radio/TV/anything is the tiniest comment, the small little wink out to all the hipsters out there about Chick-fil-A. It was so jarring I stopped my podcast right in the middle. I find myself wincing in some kind of shadow of PTSD even now when my presets hit APM or NPR.
For the first time I realized that this show wasn't made for me... it's for a different type of person. But I really thought I was that person. I didn't realize I had to be that Chick-fil-A-hater-type who glibly talks about how they _used_ to eat there as some kind of shibboleth to other... what? "Liberals" I don't even know what that word means anymore, but I find myself wondering if maybe Fox is at least transparent in their snideness?
I'm still working through the stages of grief over losing this show. But I'll get there.

Jun. 26 2013 10:46 PM

Just awful. There were so many moment where you could have stepped in and offered some journalistic integrity. When the baby "looks" at the mom, how about pointing out that babies can't focus their eyes? Agree strongly with folks who saw this as not science and emotionally manipulative. Yes, the question of where life begins comes up but that was not what this was about. It was about selfish people who forced a being into existence so their own parental instincts could be satisfied. This is not a question of pro-life, pro-choice, it's a question of "how far does one go?" If these people had lived a hundred years ago they simply would not have a child. And they would have to get over it. Gross.

Jun. 21 2013 01:16 PM
HELLEN from US

Hello my good friends please do not see this strange cause it my life story about my healing, i was having HIV for good 6yrs. Things were not working fine for me due to my health status i know longer have friends know lover it even takes time before my family co-operate with me due to this i tried all possible means i can to get this devilish sickness out of my body i went to hospitals hierarchies and other heath organization but all remains the same till yet i never gave up cos i was not born with this illness so i decided to take it over to the internet to see if i could get remedy, on my search i saw a testimony of a woman, she said she was also having a terrible sickness for over 3yrs but now she is healed i was surprise at first when i saw her test so she wrote a name dr SOLABO and also gave his email id so i mailed them which is (Herbalhealingtemple@gmail.com) i told them about my problem and after the processes he told me that am healed but i never believed he told me to go and confirm it from the hospital were i have been taking treatment still i never believed also although he gave me evidence that the sickness was gone.
Finally i decided to go for check up and to my surprise my doctor said the sickness was know longer there with thought of joy i started shearing tears.
My friends today am now married bless with 2kids, so if you have any sickness kindly email (Herbalhealingtemple@gmail.com) sir i will forever remain in you debt.
Thank you sir am grateful

Jun. 18 2013 11:20 AM
Logan Sorese from Richmond, Virginia

You hit me right in the feels, Radiolab. Stop making me cry.

Jun. 08 2013 10:05 PM
M from CA

For those wondering about Naima, I think it comes from the Turtle Island String Quartet's album A Love Supreme: The Legacy of John Coltrane.

Jun. 06 2013 06:42 PM
jess from wisconsin

moved me to tears. amazing story.

Jun. 05 2013 08:38 PM

I was disappointed by the lack of consideration of what happens when things don't go perfectly - as per the interesting story from @sasha lawless

The times when keeping your baby on life support is likely to give her serious injuries and/or suffer ongoing torturous pain - in some cases, with no regress, until she finally passes away. Or leaving them with horrific organ/brain injuries going into something that might resemble a "life".

What sort of decision is this to make? Here it's glorified into a "fight for life" - the parents hoping & willing the baby to show it's "fight".

The possibility of real & ongoing suffering should be taken into account as much of the possibility of success. This seems utterly missing from the story, which seemed irresponsible to me. Please don't allow parents to believe they can justify this sort of decision by convincing themselves it's the baby's chance to "give it a go" in all cases.

When it finishes perfectly it seems OK, please show us the reality. Show us the real risk in making these decisions.

Jun. 02 2013 10:27 PM
Anthony R from Milwaukee, WI

I'm a thirty-one year old male listener. I don't usually comment but I just wanted to let you know that this is the best RadioLab episode I've heard to date. Thank you for the beautiful story.

Jun. 01 2013 09:27 PM

Somewhere in the show, Jad or Robert mentioned that some parents were being sued by the their once premie children who were "saved" by the NICU tubes and devices, but were not able to live fulfilled lives. I really would like to hear some of those stories. I bet they are just as emotional and gut-wrenching. I am a mother of two small girls, and understand to some degree what the parents went through in the story. I just really wish that the story would venture into more challenging territories, such as how far can science push to be ethical to infants and to the society as a whole? Or what are the consequences if the infants are not one of the lucky ones as in this story? Or is it fair for other people to share the cost of those parents that intentionally push the boundary of pregnancy? Or as science progresses, will that cutoff line of 22 week keep moving back? Just to name a few. Instead, this episode never strays far from presenting just an emotional story. Nothing more. I don't necessarily think RadioLab is all about science. But it has always made me think. This one certainly did NOT.

Jun. 01 2013 02:48 AM
Ann from Los Angeles

Radiolab missed the mark on this one.

I always tune in for a multi-faceted and richly dimensional show. I donate to this program for the splendid work and will continue to do so. However, this episode is an emotional tale and doesn't seem to have the in depth analysis I have come to expect.

I am disappointed because a huge element of this full-length episode that was not touched.

CO$T.

This comes across as the aftermath of an extremely selfish decision of a person. She pushes her family, and her body, and countless others to have a child. Months and months of medical, fertility, and prenatal care, 6 months of the most intensive care needs in the hospital, $14,000 for flu shots... Who is paying for this? Our health insurance dollars? Our tax dollars?

Could this possibly be related to why the U.S. healthcare system is screwed up?

Let's tackle this on an upcoming episode. I'll be all ears.

May. 30 2013 12:41 AM
Chai

Jad, Robert,

I am a big fan but this one disappointed me.
You were playing with the emotions of the listeners with so much suspense.

It was 40 - 50 minutes of torture which I could not bear any more and had to fast forward the story.

Also, I don't agree with the one-dimensional nature of your treatment. What about those families who tool the same decision but are now regretting it?

If you don't want to judge, at least give us both sides of the coin.

May. 29 2013 09:49 PM
Bob

TLDR: A woman who can't have kids forces her husband and then body, through many many drugs, to take a fetus. Her body, surprise surprise, rejects it and then Doctors won't tell the parents the stats and facts.

Take out the melodramatic pauses and this episode is 14 minutes long.

Between this and the "Are You Sure?" episode I wonder if RL has run out of ideas.

May. 29 2013 02:12 PM
Yourewelcome.ca from Toronto

So many emotions in this episode. A story to remind us to be thankful every day we wake up, and stop worrying about meaningless matters.
Appreciate simple things!

May. 29 2013 03:09 AM
Celia from Vancouver BC

A beautiful episode. Thank-you for sharing it.

May. 27 2013 06:34 PM
Laura from McKinleyville CA

My son came just shy of 30 weeks.... and he died suddenly at 4 days old. He was my first and only child.
I am now pregnant with another son and the fears of prematurity and NICU life are paralyzing.

This episode really was accurate and clear to what preemie parents and NICU life is like. For those of you who are having a hard time gaining any perspective from this amazing and profound episode then I congratulate you.
Your mind is not letting you understand, the words and the emotion will not permeate and there is nothing short of living through it yourself that will help you to understand. Good for you, you are lucky.

For those of you who said you learned nothing from this: did you ever stop and think that maybe the entire point is that these situations are individual and complex and heavy and there usually is no definitive right or wrong in many cases because it all changes back and forth so quickly and it does have to do with gut instincts and things that are hard to measure by science? Lack of understanding on this story comes from people's own ignorance with dealing with these sort of times in their lives where there is way too much grey area and not enough black and white. I'm sorry if that is what you were hoping for, i think most parents in the NICU are hoping for that too.

Some of the comments on here are just ridiculous.
My husband and I are scientific people and we actually knew about the hand holding reflex among many other things but that doesn't change anything about how doctors deal with you or how you feel when you look at your very real and individual child. There is something very very very real about a child's will to live even if born early. They have personalities and you know them better than anyone. My son had the fight, i believe all of them do, but circumstances changed it took him and he died. They are never implying on here any different and I am SURE the parents understand that they won the lottery. It does come down to luck and chance. But being angry at them for winning solves nothing.

I do think that as humans we like to gloss over the hard stuff and it would have been nice to hear from Preemie parents who have lost the fight and lost a child. We matter too and even though our children died they matter just as much as the ones that survive. Not saying that this episode implied any differently but I think it is important to bring awareness to the entire picture.

If you are angry at this story then get a grip. this is REAL life. Whether you like it or not. These parents did an excellent job of sharing a very REAL picture of what life is like in the NICU with a preemie.

May. 26 2013 04:39 PM
Angela from Washington DC

Thank you for this beautiful story. I was moved to tears.

May. 24 2013 12:56 PM
Alina from Berkeley, CA

I loved this episode. Thank you RL and the parents. To those who question the financial/moral/selfish aspects of this - the parents struggled with the questions, too. Maybe RL did not have time to explore those issues in one episode, but the mom wrote about it in the lengthy articles. Please read them; they are insightful.
I did not feel that the episode had a political agenda at all. They were just trying to explain the grey area in between life and death and how we decide that a fetus is a viable human or not.
I am firmly pro-choice and pro-science and an atheist. This episode did not change my mind nor did it make me 'hate' the pro-life crowd any more or less that I already do. I simply did not think this was a political episode at all. For those who interpreted it that way, I think you are misguided.

May. 23 2013 01:46 PM

I had a hard time listening to what I see happen all the time from other medical staff: the fake neutrality in life/death situations that does no good for anyone. When the nurse was saying 'I know grasping is just a reflex but I never say that to the parents.' Why? That should be explained to parents before they go in. What a huge deal for the father and it turns out that any brainstem does this. Would he have chosen differently? And the practitioner 'I don't talk about numbers because every baby is different' What? Sure, every baby is different, but people are asking a licensed professional for an objective interpretation of the well-studied statistics. Why are we here otherwise? Just go to blogs or google 'can babies survive the NICU?' Again, would the parents have decided differently if they heard all the numbers again in a comforting but objective way? Who knows. Yes this story ended well and I congratulate the family. Future parents should know though that for every one child who has this story, 2-3 suffer to varying degrees until they die anyway, and 1-2 live with huge problems (not doing gymnastics and giving kisses to their parents).

'Do you want us to do everything?' is a big no no too. Poor language. It implies that there is one packaged deal. It implies that making decisions to treat pain in different ways or to not break someone's ribs with futile CPR is somehow not considering 'everything' or is somehow less than perfect care. This phrase needs to die.

There are nice and mean ways to say things obviously, but docs and nurses and staff need to start sharing with patients and families and parents what we say in the breakroom and behind closed doors because it is the same information we would want to know if our relatives fell ill. (similar to the CPR stuff on a recent episode)

I respect the Radiolab producers a lot. I agree with many others though: this would have been a great one to hear a little more objective debate to go with the story

May. 21 2013 10:41 PM
L from MA from MA

I was riveted by the story and as a pediatric occupational therapist I have worked with a lot of these micro preemies when they come home. I realized you took one story from a well written article and donated time to it which was great - but unfortunately this also became my major issue with this pod cast - its Hollywood ending. Wonderfully this story has/is working out so far. Mom and Dad worry about what may occur but the little girl is fine. What got to me is that I have seen more children than fingers and toes that this type of intervention does not work out fine. One of the bigger questions that never really got addressed is how our science and society is now able to keep these children alive - but does not necessarily have the ability to help or support them when things are not that perfect movie ending. Even those $14,000 shots are paid for by insurance - which comes from somewhere - and not just the money that was paid by the premium of the subscriber. I think I would have liked to hear a two part show that intermixed both the positives and negatives - with other parents and their issues - even keeping the ending that you did. Thank you for your time - and your willingness to read and take suggestions.

May. 21 2013 08:46 PM
Andrew from Philadelphia, PA

I was going to give money and support Radiolab because it had a quality and intelligence but then I heard this episode. I'll contribute after it is evident that you returned to creating something i like, which is to say NOT like this episode.

May. 21 2013 07:26 PM
momcat from Honolulu, HI

As a mom of a preemie, I just wanted to thank you for this story.

May. 21 2013 06:36 PM
Mike from Saint Louis

Wow RadioLab, at the 20 minute mark, IMO the most gripping portion of the episode, you decided to stop the action and shill for some criminal corporation? Tasteless and irritating. Yes, you're taking money from News Corp, but please don't start emulating their broadcasting style.

May. 20 2013 03:15 PM
kl

The story was nicely told, but I was disappointed that it didn't really address the tough questions or present much science. I'm fine with emotions (makes the story more interesting and helps me to relate to the parents), but I'm used to hearing more debate on radio lab...more perspectives.

May. 19 2013 09:39 PM
sasha lawless from Bend, Oregon

This reminded me of my second pregnancy with mono-mono twins. Their cords were tangled and they were given a 50% chance of survival. Mono-mono twins are taken at 32 wks gestation to increase survival. My daughter Amaya also had a heart problem. They were born by c-section at 33 wks (after a month or so on bedrest) and were 4lbs 2 0z and 4lbs 4 oz. Both were in NICU for a week, then Amaya was taken into surgery. She underwent 16 surgeries, her heart was left open and she was placed on life support (the youngest person in the nation at the time). I went back and forth from the NICU at OHSU where my daugther Azlyn was in Portland, Or. to Doerenbechers Children's hospital in Portland where Amaya was. My partner never left Amaya's side-while I left only to pump breast milk for Azlyn. We didn't eat-we spent all of our money on coffee. Amaya's brain began to swell, and after two weeks of life-we were asked to make a choice to keep her on life support and risk severe injuries to her or let her go. I was 20. My partner 22. We were scared. Alone. Heartbroken. We couldn't let her suffer. We chose to take her off life support. She died 3 times before the final fourth time...we never got to hold her...we just kept begging her to let go-not suffer. She slipped away. We then spent 2 more months in the hospital with Azlyn. She left the hospital at 4lbs 15 oz with a apnea monitor for 6 months (she would often forget to breathe). Azlyn is now a healthy smart 10 year old. At 2 1/2 years old, I remarked that white butterflies always followed Azlyn. Azzy replied (barely able to speak at this time) "mama, it's Amaya." I later learned that cultures in Africa and Ireland believed that when a child's body is lost, it soul is replaced into a white butterfly. I now have 2 more girls, and a son-and all four children know their sister Amaya as a white butterfly.

May. 18 2013 09:22 PM
Xenthon D'gnv

The comments to this point seem to divide into several absolute camps: wonderful, selfish, miracle, adopt, notRadiolabish, not educational, commiserate, commiserate with negative outcome, political advocacy, distress with political advocacy...

Fascinating. I enjoy the comments. Articulate and reasoned points of view are joy to my brain.

On some matters of opinion, there is no point in debate.

I know you guys read the comments... Good for you, I'm sure it can be brutal. You have my sympathy.
People who care about you will tell you to thicken your skin, don't listen.
Keep your skin thin and stay human.
An impenetrable shell is not an immunity it is an abnegation of the senses.
Take it all with a big grain of salt. Big... like a foot across on each side.

That having been said...

I go to the shoe store to buy shoes to the grocery store to buy groceries. If I get to the shoe store and it's filled with crispy bacon... hey, I like bacon, and I may be happy to have some... BUT I went to the shoe store looking for shoes.

TL DR? = Radiolab = science, learn and a good story. Pitching bathetic is LCD. Sure it sells, like Reality TV.

I love you guys. Never stop. C.

May. 18 2013 12:09 PM
Pete from The West

@Esther:

Even if you do indeed work in a NICU (which I personally doubt, since you post hits the talking points of the anti-abortion movement), you are a bit confused about sentience and about stress induced chemical reactions.

It's worth noting that evolutionary defense mechanisms such as ACTH and ACTH-like sequences (which is basically what the links you posted discuss) are produced not only by humans and other mammals (and mature enough fetuses), but also by mollusks, insects and worms.

I am touched by all the personal stories. But the fact that the majority of us were conceived as a result of sexual intercourse should not mean that we should anthropomorphize that special sperm-egg bond which was technically the beginning of the forming of each one of us.

Of course, someone like Esther can always suggest that the sperm's apparent attraction to sugars is a sign of sentience and a "will to live." However, RadioLab is supposed to be at least somewhat based on scientific evidence, so I hope episodes like this will be left to Lifetime to do in the future.

May. 15 2013 11:28 PM
The Special Delivery Project from USA

Thank you for writing this story. As a family who has been through a loss, we created a free grief support children’s book for the community. www.SpecialDeliveryBook.org. https://www.facebook.com/pages/Special-Delivery-support-for-infant-loss/114924975327935.

May. 15 2013 10:12 PM
Julie from Cloverdale, CA

I just listened to the 23 Weeks 6 days episode. I enjoyed it very much. My son was born at 24 weeks 4 days, 830 grams. It's a struggle to get through the hospital stuff and bonding is tricky and crying every time you look at your baby in the isolette is not fun, but the rewards of the miracle of life is overwhelmingly worth it. My son is a healthy 16 year old 6 ft. 5 in. 200 lb. young man and his presence in my life makes me thankful every day.
Thank you for sharing your story.

May. 15 2013 05:44 PM
mary from Maryland

An amazing miracle of the Creator of the Universe! What a wonderful testimony to the sanctity of life.
By the way, the owner of Chick Fil A and the Gay Lesbian Alliance have spoken and are on good terms. They both realize they can have an opinion and still care and,yes, even love one another!!!

May. 15 2013 03:28 PM
Lauren from Portland, OR

This episode was so emotionally gut-wrenching for me, and amazingly close to home. I was born premature in 1983 at only 6 months along, weighed 1 lb 13 ounces, and wasn't expected to live, but am grateful (and so very lucky) to say that I not only survived, but have not suffered any major health issues as a consequence of my early birth. Being my parent's first child, I can only imagine the emotions they went through, and this episode helped me to see things from a parent's point of view. My parent's also nicknamed me "peanut" while I was in the NICU!

Thank you so very much for capturing such a beautiful and poignant story. As always, you continue to do fabulous work.

May. 14 2013 11:34 PM
Jesse Peterson-Brandt

Rob dela Nola: The piece of music at 34:20 is "Naima" by John Coltrane. Not sure who the artist here is (definitely not Coltrane) but hopefully that helps start the search.

May. 14 2013 02:09 PM
Esther

I work in an NICU, with the most extreme preterm infants who are born 23 0/7 weeks gestation and older. If the definition of sentience is "the ability to sense, feel and have consciousness," which means that they perceive (taste, touch, sight, sound, smell) and react to those perceptions, then these infants are most definitely sentient. They withdraw from light, startle from sound, and respond to a warm, constant touch with relaxation and stabilization of their vital signs.

Most significantly, when we cause pain through procedures, they withdraw. Their heart rate and blood pressure drastically increase and they show all physical symptoms of pain, including crying, that we would see in an older or even term infant. In fact, research supports that even 23 0/7 week infants have developed neural pathways to perceive pain, and even shows that they lack the inhibitory neurons to turn off the perception of pain (the dulling of pain as time progresses). So, if anything they perceive much more pain that we do. It has also been proven that preterm survivors have long-lasting neurological effects from untreated and uncontrolled pain in their ability to cope with pain when they grow up.

Further, these infants learn. They beging to associate preparation for procedures that are painful with similar responses. For example, when preparing them for blood collection via heel poke, or preparing them for suctioning of their airways.

For those that are sentient and interested, here are some actual resources on the subject:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447527/

http://www.utoronto.ca/pain/uploads/files/Miller%20-%20Procedural%20Pain%20and%20Brain%20Development%20in%20Premature%20Newborns.pdf

May. 14 2013 01:34 PM
Rob dela Nola from Austin

So frustrated to learn that my favorite podcast doesn't offer full program credits. Does ANYONE know the name of the string piece featured at 34:20 in the show, as credits are being read? It has been haunting me for a couple years. What IS it?

May. 14 2013 12:44 PM
Emily from Massachusetts

I appreciate this episode of RadioLab because it is a story similar to my own. I was born at 26 weeks weighing in at 1 lb 13 oz. My parents faced the same struggles as the parents in the show. This episode shines a light on the unexpected outcomes associated with having a child. I often wonder why I survived and others did not, but I don’t believe it was because I was stronger or had a greater will to live. For some reason I got a chance at life. Three days ago I earned my doctorate and will continue to live my life for myself and for the other infants with me in the NICU who were not as fortunate.

May. 13 2013 10:45 PM
Tim

I don't know why everybody is so offended by the "will to live" thing. There are way more people in this episode denying the existence of it in infants this age than there are supporting it.

May. 13 2013 02:12 PM
Al from NH

I'm surprised to see so many comments critical of this episode. I'll be the first to agree that it is one of Radiolab's sappier moments, but since when does being a science-themed program exclude emotional or personal stories? Decisions based on emotions as opposed to logic or ethics are as much a part of the human experience as cell division and muscle reflexes. And the show isn't 8th grade debate class, where concise arguments are made for each side with 2 minutes for rebuttle. This wasn't a failed presentation of the ethical sides of NICU policy. It was a personal story about a personal decision and a discussion of the especially gray area of the issue, which is anything but a-typical of the show.

I am also shocked to hear people describe this couple as "entitled" and "self-important". Last I checked, journalists in Tampa are not famous for clinking glasses of champagne on their yacht while trash-talking the commoners. And "self-absorbed"? Do you really think you would be thinking about other people's health insurance premiums if you were in the same position? If anything, they were trying to make a decision that was fair to that baby (or the possible future of that future baby, if you refuse to put it in the same category as a healthy baby), not about their needs and wants as parents. Anyone who walked away from this thinking that two parents worrying about coffins the size of shoe boxes are selfish must have been listening to a different show.

I for one say thank you to Radiolab for another thought provoking episode, sap and all.

May. 13 2013 01:53 PM
Pete from The West

@Marsha from Madrid.

You can have your opinion. Just don't expect me and everyone else to pay for it (as the happy subjects of the show apparently do).

The people who spend money on their pets normally spend their OWN money. The subjects of this show did not.

Also, sentence is the crux of the matter here, since half the show was focusing on the "will to live" and "I am here" attributes of a fetus. Cats and chickens are sentient (and can exhibit a "will to live"), fetuses are not.

Finally, as mentioned earlier, this show effectively casts doubt on the decisions made by many less arrogant and less entitled couples in similar circumstances.

May. 13 2013 01:16 PM
linda from wisconsin

While I found the story touching and I am glad it turned out well for the family described, I am disturbed by the comments that imply that some babies "want to live" and therefore live...does that mean that for those families who lost babies they must presume that their babies did not "want" to live or did not "try" hard enough? I am always struck by how people do not see the other side of comments like this. Are parents to take it that if only they had read Harry Potter to their child they might have stayed alive "to hear the end"? While the parents might want to believe in that sort of magic, how would they have felt about it had she not survived?
yes Juniper defied the odds, but when they say that 80% don't survive that means that 20% do, even if the odds are 1% that was based on the fact that some do survive. But I do wish there was a bit more discussion of all of the cases where the outcome is not so positive, if just to put it all in perspective. I noted that there was not one interview with a family whose child did not survive with no apparent deficits, or whose child did not survive.
I like many of the others who have commented have been a long time Radiolab fan but find some of these episodes as wandering away from science and into superstition and magic.

May. 13 2013 10:49 AM
Marsha from Madrid

@Pete from the West

We get it. You didn't like the episode. I just hope that your life continues to be filled with the love of sentient cats and chickens, and that you never have to go through the "self-important" experience of being a first time mother with a premature baby.
You've shared your opinion. Let us have our own.

May. 13 2013 09:50 AM
Ryan from Buffalo, NY

This story was so emotionally intense for me, I almost has to stop listening several times.

May. 13 2013 09:13 AM
ld123 from DC

Thanks to Kelley Benham and Tom French for sharing their remarkable story. It was brave, beautiful and touching.

May. 12 2013 09:13 PM
Pete from The West

@Essie from Canada: "...If only this episode could somehow canopy over, and explain why some people spend thousands to save sick cats. That I will truly never understand......."

People spend thousands of THEIR OWN money to save sick cats. Cats are also sentient, they are self-aware, they fear death, they experience pain.... They are also cute and they are generally comforting to their owners, so intelligent people can have empathy for a sick cat. Conversely, 24-weeks old fetuses possess none of these qualities, and the enormous costs of preserving them to a viable state are most often (and very likely, in this case) borne by all of us.

@John - St. Louis, MO: "...For scientific thinking and exploration, when is it EVER okay to discard the evidence (and yes, human/individual experience is evidence)...."

Uhm, nope. The self-important epiphany of some guy in a Target store and the anthropomorphizing of a 24-week old fetus are hardly "evidence" of anything, other than a lapse of judgement on part of the producers of a program which is supposed to build on somewhat scientific premisses.

@Eric Pomert from Berkeley, CA: "...The pauses were lovely, and I'm glad you took the risk to include them...."

I agree, the pauses were the only worthwhile part of this whole episode. :)

May. 11 2013 09:44 PM
Lorene Rodriguez-Hernandez from Union City, California

I appreciate this story so much because it is almost exactly what my family went through in 1980.
I had premie twins, Albert 2lbs 1oz., Sonny 1lb 16oz.
They are now grown men and 32 years old.
I plan to share this with them, my oldest son shared this with me.
Thanks
Lorene

May. 11 2013 11:59 AM
Eric Pomert from Berkeley, CA

I so appreciate how much value and respect was placed on vulnerability in this story that moves so deeply into the mystery of parenthood. The pauses were lovely, and I'm glad you took the risk to include them - they let the story touch me where words can't go.

May. 10 2013 09:39 PM
John - St. Louis, MO

To everyone on either side of the different issues...For scientific thinking and exploration, when is it EVER okay to discard the evidence (and yes, human/individual experience is evidence) of any issue being examined? Especially when the evidence challenges you to weigh each side of any argument. Personally, I think many people don't understand the risk involved in listening to another's experience, especially when it is different from our own. Regardless of your position, I hope all of you listen to each side of the argument and issues being talked about, knowing first and foremost that sometimes, to listen, can put you at risk of having to change your mind.

May. 10 2013 04:20 PM
Shadylady

I'm sure her parents and everyone following this thread are uplifted by your personal opinion and objection to the child's name. Thanks Matt.

May. 10 2013 08:40 AM
Matt

The next step in this harrowing journey is growing up with the GOD AWFUL name "Juniper." Holy cow there will be resentment when she gets older....

May. 10 2013 07:21 AM
Essie from Canada

This episode was extremely thought provoking. Although it appears some liberal elites may have had their chicken feathers ruffled. Jad and Robert have proven everything isn't as black and white as some segregated opinions may believe.

Thank-you Radiolab for at least encouraging independent thought, outside of the demigod attitudes that so many people defend.

If only this episode could somehow canopy over, and explain why some people spend thousands to save sick cats. That I will truly never understand.......

May. 10 2013 01:11 AM
Pete from West Coast

Wow! I love Radiolab, but this was one very manipulative, pointless and ultimately disturbing show.

Disturbing on a few levels: First, it begs the question: who pays for the preservation of what are essentially spontaneously aborted fetuses?

If it was the parents who paid for it all, then fine.

But if it is paid for by higher insurance premiums for all of us, or higher taxes, then it's not fine.

There are real, sentient human beings, who die every day, because either treatment is too expensive, or unavailable because there isn't enough money for research. Methinks limited resources are much better spent on sentient humans and research, than on the Target store epiphanies of some amazingly entitled guy.

Oh, and one more thing: that chicken that the happy parents say ate at Chick-fil-A (before the "gay thing"), was infinitely more sentient than that million dollar fetus.

The chicken was self-aware, had fear of death, processed pain and probably had a miserable life and a horrible death. The fetus could "feel" none of these things, yet much of the show was spent on LIfe Time moments about its reflexes.

Finally, the show was disturbing because it glossed over the vast majority of cases where no amount of money spent can ensure the survival of the fetus. Or where survival results in lifelong pain and misery.

This show (I suppose this is exactly what it was) made a mockery of the hard decisions many others, less entitled and less self-absorbed, have had to make in similar circumstances.

It's beyond me why this mush was made by RadioLab. Was this couple friends of the producer, or did someone on staff join Quiverfull?

May. 09 2013 02:04 AM
Cate from Texas

Continued from previous comment...

So thats my sappy story. I know that my viewpoint is colored by my emotional connection to this issue and biased toward my own experience. That being said, I recognize the complexity of the problem. When I had my son, I saw the world through the lens of fundamental religion. Since then, my world view has changed and my viewpoint has become fare less black and white. I've had long conversations with friends of mine about life, morality, science, and "good" and "bad". I feel lucky that I was never asked me to make the choice to save my son or not, because I don't know how I could have possibly decided. Death is not the worst case scenario. Living a painful existence is far worse than dying. When faced with that choice, you gamble on whether that child's life will be awful or not. Morally I can't say if its "right" to save these babies. But I can't look at my son and say that it is "wrong" to save them either. I realize that that is my emotional attachment talking, but I don't know of any parent who can look at their child and say it was "wrong" for them to be given a chance to live.
Upon reading comments here, I find that I'm not angry with the opposing viewpoints. I have my own battle raging on this issue between my mind and heart and I can clearly acknowledge both arguments. Personally, I feel the desire to have a little girl (based on the fulfilling relationship I have with my own mom) but am conflicted about it due to reasons that many of the commentors have listed. My risk of having another preterm labor are significantly greater now. I realize that my pregnancy (should I do it) will be expensive and high-risk. Doctors reassure me that I will likely make it to the end of the pregnancy with the help of a cerclage, weekly progesterone shots, bedrest, etc. But even with this reassurance I can't feel completely satisfied that going forward with this desire is the right way to go. If I do have another preemie, I might be faced with that question. That horrifying and dreaded question. And how could I answer it? What if I can't let the baby go and then live a life that is focused on the care of a severely handicapped child? What about the child I already have? Is it responsible to gamble on another when he is hear NOW needing me NOW? Is it selfish to want a child when my body seems committed to betraying me so? These are the questions I have. It is so very difficult to know the "right" answers. They all seem like "right" answers at the very same time they seem like "wrong" ones.

Perhaps the reason why so many are disappointed, outraged, and/or uncomfortable with this podcast is because these answers are so ambiguous and play to the very core of us all. The story told may seem trite and irrational, but the underlying current is a subtle reminder that we still are struggling with the deepest questions like what makes us human? When is a person a PERSON? And who gets to decide.

May. 08 2013 01:16 PM
Cate from Texas

Wow. I listened to this podcast yesterday after I received a text from my husband telling me to listen. About a third the way in my almost 6 year old son came in and asked me if he could listen to the "story" with me. We sat there together and listened. It is so closely related to our own story that it was heart wrenching and took me back to our own preemie experience.

My son (the one listening with me) was born at 24 weeks to the day. He weighed 1 pound 7 ounces. It was unreal. My husband and I were not planning on getting pregnant until some time in the future. I found out I was pregnant at 12 weeks and was shocked and scared. I had no complications with my pregnancy until I suddenly began cramping at 24 weeks. I went to the hospital, starting bleeding profusely in the car on the way there, and then was rushed to labor and delivery upon arrival. They did not know why I was bleeding and it was obvious the nurse was scared on our behalf. An ultrasound showed the baby was half way through the birth canal, feet first. I was rushed into emergency c-section and put out. My husband watched as they resuscitated our son. I woke up to screaming pain all over my body. I just assumed the baby was dead and I thought I was dying too. I remember uttering the words "I'm so sorry" to my husband over and over again because I truly thought I killed our son. It was worse than a nightmare. I never could have imagined such a traumatic birth experience. When I saw my son for the first time, he was black and blue from the hips down, his skin was torn in spots and transparent everywhere, he was covered in fine white hair, and was hooked to an array of beeping and flashing machines. He laid flat on a ventilator that shook rapidly helping his lungs to open and close. He looked just like a baby bird who fell out of the nest too soon. Anyway, long story short(ish), he stayed in the NICU for 4 months. He had a heart and hernia surgery. He had countless blood transfusions. He fought off pneumonia twice. He was on steroids, surfactant, and several other medications to help him survive. He came home on oxygen and an apnea monitor. He went through years of physical, occupational, and speech therapy. And at this point, at almost 6 years, he has recently been diagnosed with Pervasive Developmental Disorder (an Autism Spectrum Disorder). He is very healthy physically, despite the odds that he would have at the very least severe asthma. His developmental delays are more issues with social skills and having a hard time controlling his impulses. We are still seeking help and further therapy to teach him to compensate for these quirks. EVERYTHING about him is affected by his prematurity. EVERYTHING. It has been a long, difficult road, but he is a lucky one. And I'm glad to have him. He is happy and kind and sincere, he absolutely makes our family better.

May. 08 2013 12:59 PM
Thomas

Some of the critiques on here are disturbing. Since when is Radiolab designated the arbiter of all scientific theories? Since when are they required (or inferred) to have a political agenda?

They are great storytellers first and foremost, and when they're at their best they provoke contemplation of the complexities of the intersection of science and humanity.

And this was certainly them at their best.

May. 08 2013 04:30 AM
CheeseXmoon from leiria

Another great episode about two parents thoughts and emotions on a very difficult period time in their lives and the tough choices they had to make. Very interesting and moving.
Hope all this close-minded/Knee-jerk reactions don´t drive you away from telling the stories YOU want to tell, thats what made radiolab my favorite podcast. Some of these comments reminded me of the Chaplin quote "we think too much and feel too little"

May. 07 2013 09:35 PM
Chris Sowick

I'm not upset and I'm certainly not withdrawing my support, but I tend to agree with Eric from Omaha. This is very moving story that gave me goosebumps, but its also somewhat emotionally manipulative and goes way to far in anthropomorphizing mindless infants.

Saying the "the baby decides" is like saying that in a game of computer chess, one software program "decided" to win and the other "decided" to lose.

Infants do not decide anything because they are incapable of making decisions. Everything is purely pre-wired instinct and reflexes at that stage of brain development.

May. 07 2013 06:41 PM
Chris Sowick

I 100% guarantee you that a new born infant, let alone a 24 week new born infant, has nothing remotely resembling will or intention or fortitude. It doesn't even have what we would call a mind, and certainly not a self. YES ITS ALL PHYSIOLOGY at that point.

May. 07 2013 06:29 PM
Zoe

This story made me cry, but more importantly, it made me think. No, it didn't ask, or answer, all the questions I had--for instance: what would it have meant in Juniper's case to "go peacefully?" Who can possibly know how "peaceful" dying would be in her case? I can't imagine the anguish these parents went through trying to decide! So many assumptions are made about things like the low-brain reflexivity of sucking and finger holding when some babies don't even have these skills till weeks after birth. Maybe they are reflexes, but they are the reflexes of a human being. We're not talking about a goldfish here (although, from some of these comments, I feel there might be more sympathy for a fish or a lab rat among this listenership). Whether programmed by evolution or placed there by God, those reflexes have a function. Their very helplessness states to any other humans present, "Hello, I'm here. I need you. You are the only way." And unless we are actually there in that room, seeing those reflexes and caring for that baby human, how dare we judge these parents?

May. 07 2013 03:23 PM
rich from Ohio

This episode profoundly affected me. I am now a subscriber to this podcast. I had no idea a radio program could trigger such a reaction. Thank you.

May. 07 2013 03:17 PM
Barbara Lundberg from Smithfield UT

I loved this episode, and after listening to it I was amazed to read many of the comments! I am shocked at how much negativity and hatred is displayed. The story in this podcast is filled with tenderness and compassion and I found it shocking that such a show was met with such harsh criticism.

I feel like I must address the accusation of the "right to life agenda." First of all, this is not a mother who got pregnant accidentally and had to choose whether or not to keep an unwanted baby. This is a story of a family who wanted a baby, and the stuggles they endured to ultimately have that baby. The choices made by these parents are theirs, and theirs alone. I simply cannot understand strangers listening to this podcast and then casting their judgement on the decisions made by this couple. I wonder if all the negativity came from people who are not themselves parents?

I agree with a commenter who said this episode seemed more in the style of This American Life, as it was mainly a personal story being told, but is that a horrible thing? I love This American Life and RadioLab and they share many similarities. They have even been guests on each other's shows.

I felt a real connection with this episode and enjoyed it very much. Keep up the good work RadioLab.

May. 07 2013 11:45 AM
k-blaze from Los Angeles, CA

I was born three months premature at 1 lb and 3 oz. My parents said I spent about three months in the hospital before they took me home. They would tell me all the time growing up that I was a miracle baby, and I never really grasped what my first months of life meant to them until hearing this. I started crying about halfway through the episode.

My mom has a problem with her uterus. I don't know the exact name of her condition, but her uterus cannot hold a baby past five months. Out of five pregnancies in her life, I was the only one who made it to six months in the womb. She tells me I was born a fighter, so when I heard Tom and Kelley say that about Juniper, it made me feel very hopeful for their situation. I am 23 years old today and healthy.

Now I want to ask my mom how many weeks was I in her womb before she went into labor with me. Thank you for the lovely story. You've always been my favorite podcast.

May. 07 2013 06:09 AM
Jason

My wife & I had identical triplet preemies born at 24 weeks. No fertility treatments involved - those would be fraternal. One of ours did not survive, two are smart, funny, and nine. Very rare circumstances, but within the outlines of this episode.

It is a gray world, and only gradually does it become apparent which side of the line you've been living on. Like Schrodinger's cat - but seeing the story from inside the box.

I'll affirm asmallplanet's post. This episode accurately represents modern medicine and the gray zone between likely survival and hoping for miracles. Limbo has no marked exits.

The criticisms here really miss the point so badly I feel sorry for the people making them.

I'm not sure why some people project woo onto this episode - it's simply not there. Every single scene is true to life in that twilight zone: unstable blood pressure, sats, translucent skin like wet tissue paper, eyes not opened yet, ROP, Synagis, inexplicable signs of hope, other babies with worse, "futile". So many signposts. Ask someone who knows. Don't ask me - I might tell you.

Jad and Robert have very gently presented a story about hard decisions people make every day and the terrible, awesome beauty of life visible from that weird in-between land.

May. 07 2013 12:43 AM
RD in CA from California

All opinions on the production aside, I have never cringed so hard in my entire life. I cringed EVERY SINGLE MINUTE, for all 59+ minutes of this podcast.

May. 06 2013 08:07 PM
Joe from NY

• This was a very complex and frightening episode about the complexities of parenthood today.

• I love old Radiolab. I still enjoy and listen to what they make.

• If you want a more scientific/objective discussion use what you learned here and dig deeper on your own.

END NOTE: I'm not a father and don't think I will be, so I was thinking of health care system cost, and that it was obvious it shouldn't happen, due to the bad signs early on. After the episode, I realized its not that easy. Its the world we live in. How do we navigate these new problems? I'm confused, and thats a good thing.

May. 06 2013 05:12 PM
Tim

This American Radiolab

May. 06 2013 03:46 PM
Ben Montgomery from Tampa

Gosh, some of you folks make some pretty solid assumptions about a complicated three-year ordeal based on a whole hour of radio retelling. How very scientific, all that certainty. What bothers me more is that you'd direct some cutting remarks in a public forum toward someone you've never met.

Here's hoping you'll have the good fortune someday to meet Tom and Kelley, two of the best people out there.

May. 06 2013 03:20 PM
Renee from Virginia

I was listening to this story during work, and the part where the mother began to describe spewing chunks of what was potentially a stew of blood and baby parts from her nether regions while vomiting profusely startled and nauseated me to the point that I had to tear out my headphones and lean over the trash can for a few minutes until my gag reflex stopped acting up. That kinda came out of left field.

I mean, I expected a LITTLE bit of grossness due to the title and brief synopsis.

I am sure it is a beautiful story, but please consider a tiny bit of fair warning beforehand so that listeners won't be blindsided with overtly nauseating imagery. "Warning: sensitive listeners skip ahead this many minutes", for example. I didn't even know I was a sensitive listener until that part came up.

Sorry to complain, I love love love the podcast usually.

May. 06 2013 02:27 PM
Laura from Portland, OR

The makers of the show were very clever: they came just close enough to the abortion issue to "suggest" that no one can decide when a fetus is a human life and that therefore, abortions are immoral, but they didn't say it outright. Instead, they did it in a way that made you kind of "feeeel" that way--like you had come up with the idea yourself. Very tricky! Good thing most NPR listeners have enough critical thinking skills to see though this propaganda!

May. 06 2013 01:40 PM
Jordan from Port Washington, NY

Damn you Radiolab! I'm a father expecting my second baby girl in less than a month, and here you go pulling on my heartstrings. I was sobbing when the father in this story met his daughter for the first time. "she was so strong..." Geez, I need a Kleenex.

May. 06 2013 12:39 AM
Karen from Idaho

Thank you for broadcasting on this very delicate subject. As a medical professional, it's a relief to hear this story came to a happy end, but I feel compelled to mention that many of these stories do not result in a happy end, a majority in fact. I know parents never take these decisions lightly but I feel this story emphasizes the possible positive outcomes over the myriad negative outcomes. I've know of families that have regretted the steps they took to prolong a life that could have ended peacefully. I'm not saying there is a right or wrong answer, and I accept that we can't always make the right choice. This a heartwarming piece though, and a great story. I appreciate you covering this topic.

May. 05 2013 03:07 PM
John from Pennsylvania

Framed properly, this story is the opposite bookend to the end-of-life care program. The morally challenging situations should have been presented objectively, and discussion of costs (financial, moral, pain, health) included. Instead, Jad and Robert chose to impose themselves on the story; an increasingly problematic quality in RadioLab’s reporting. Stripped of the cooing, Kelley Benham’s behavior is as follows:

1. A woman arrives in her mid-30s without a child, then decides the time for procreation is NOW.

2. She wages protracted psychological warfare on an emotionally attached man, until he succumbs and agrees to impregnate her.

3. Discovering that nature has not equipped her to produce a baby, she decides to pursue every medical intervention science has available.

4. She advances down a path of increasingly synthetic manipulations, each additional step increasing the likelihood of complications in the development of the fetus and delivery of a healthy human being.

5. Having played a high risk game, she loses, and faces horrible complications.

6. Instead of acknowledging and showing remorse for the sufferings she has caused this being (if, indeed, it be sentient), she goes so far as to compel the medical community to act against its own advice and moral judgments.

7. Finally, she gets the child, which satisfies her emotional needs, but it is a child with very significant health disadvantages.

At each moment of decision, Helen chose personal vanity over the needs of others, including the welfare of a life she hoped to create. And, who pays for all of this? The fetus/baby/person, first of all. But, financially and morally, it is everyone else in the medical care system, which, ultimately, is all of us. Most of the sacrifices in this story are made by persons other than Kelley Benham; some willingly, many not.

May. 05 2013 01:00 PM
j276

This story is a great testimonial for adoption. That story truly needs to be told.... Unfortunately the story Radiolab chose was just the opposite- Irrational narcissism at untold expense and risk of death and deformity in order to biologically procreate.

This is not why I listen to Radiolab. I could expect it from TAL, and I would have screened the episode out based on the inevitable moon-eyed treatment of the subject matter.

What's up for next month? A special on the octamom?

May. 05 2013 04:53 AM
Joseph

To the commentors that were disappointed by this episode: what real scientific insights did any other episode of Radiolab give you? To me, Radiolab has always been more about entertainment than education, and I mean that in the best possible way. The program works because it makes cutting-edge research accessible, that is to say, it's very good at tricking you into believing that you understand something. But real science is really hard. Smart people dedicate years to study just to understand some small truths. You're not going to get anything meaningful from a casual hour of radio. To believe otherwise is just fooling yourself. My opinion anyway.

May. 04 2013 10:52 PM
asmallplanet from California

What is possible and what is probably are never the same. As a pediatric physical therapist I meet children and families who are survivors of the NICU every week. There are children who overcome what seems improbable odds to become amazing little individuals who are ready to conquer the world. There are just as many children who don't beat the odds but achieve seemingly impossible success.

It is not my place to judge people and their choices. This was a well told story that I am confident will help more than one family as they attempt to navigate the scary world of the NICU and life after the NICU....I will be sure to pass it on.

I challenge anyone who has criticized this episode to spend some time in a NICU, to talk to parents of children who survived and children who did not before critiquing the story.

Thanks Jad, Robert and Staff

May. 04 2013 07:52 PM
Ben

Can anyone tell me who was playing that cover of Naima in this episode?

May. 04 2013 03:15 PM
apollo from sf

wow, what a sappy bit of sentimental tripe. i know jad and rob are parents, but spare the rest of us your "baby pictures". what happened, such a disappointment.

May. 04 2013 02:57 PM
Dr. Lynda M. Ulrich from St. Albans Vermont

I am sitting in the sun listening to this show with my daughter - Louisa - who was born at 23 weeks 5 days, in 1997. She has nothing but some major scars on her legs to remind us that her life's journey started so unusually. We can only hope this couple is as fortunate, and even if their child has some difficulties due to this rough start, I can assure them that their life will be better for it, on the whole. Our experience included a raft of insights that we treasure and could never have gained any other way. Love and best wishes to them!
- Dr. Lynda Ulrich, St. Albans VT

May. 04 2013 02:28 PM
Steve Tannehill from Southern California

A very compelling listen - but in the end, avoided virtually all the important issues it raises and focused soley on the emotional attachment of these parents and their child. While understandable, from a societal perspective this shows everything WRONG with our health care system/system for taking care of each other. These pregnancies would NEVER have happened without intensive expensive medical intervention. Any implication that these pregnancies are "life that God intended" is absurd. There was no discussion of the cost of all this, which these parents did not bear, but are instrumental in making our health care the most expensive on the planet which is killing us economically. What was spent keeping a child in intensive care for 6 months? A million dollars? Two? How many children could be inoculated, fed and cared for with that money. In the end you focused on hyper emotionalism and avoided all the real issues. Normally I find your broadcasts compelling, engaging and enlightening. This was compelling, but in the end, highly one dimensional and added substantially to the misunderstanding about these issues. Unfortunately that makes it a fail - the first in my years of listening to RadioLab.

May. 04 2013 12:11 PM
cas from Texas/Wyoming

I/We know exactly what she/they were going through, however, our premie of 24 years ago, graduated TODAY from the University of Nebraska: Lincoln with a major in Physics and minor in Mathematics. It is a rough road but the ups and downs will be worth it. Best of Luck to them!

May. 04 2013 12:08 PM
JP from Las Vegas, NV

Just because we can do a thing doesn't necessarily mean we should.

May. 04 2013 12:01 AM
DMV from DC

Fuck you. Fuck you for making a big scary guy cry on the DC Metro.

Seriously, this is one of the most inspiring stories I've ever heard and I wish the best to this awesome family.

May. 03 2013 08:51 PM
Ben from Boston

Wow, I usually LOVE radiolab but this is ridiculous. Lifetime channel sentimentality and no real discussion of the ethics.

These people seemed very selfish and deluded to me. To spend 6 months in the hospital and ridiculous amounts of money just so the woman could pop out a baby from her own body (it's not even her biological baby anyway, with another woman's egg) is just crazy and baffling.

Why are these people being held up as examples of a "beautiful story"? I'm not saying they didn't have the choice to do all of this, but this is not beautiful - it's indulgent self-absorption. The woman just "had" to have a baby and would stop at nothing until it happened - what a sad phenomenon of an unfulfilled person.

What kind of parents are they to ignore their 2 other children while going on this escapade to fulfill their own bizarre obsession with building a baby? And the episode itself was just a nonstop congratulation of their choices, with no counterpoint whatsoever.

The only reasonable person in the entire story was the doctor who refused initially to do the surgery.

Very disappointed in this episode and the extreme sentimentality.

May. 03 2013 07:56 PM
bill from norman, ok

To be angry about a beautiful story of a family who beat long odds is to completely miss what I heard as an expression of the power of connection and the incredible love that even these veterans of NICU work have for fellow humans.

This is a story of love. If you can't get on board with that, I think you need to look deep inside yourself and ask why.

May. 03 2013 04:54 PM
McBob from Tampa

Amazing! Can you imagine that people decide to terminate at this stage because they choose not to have the baby. Amazing that our society let's that happen.

May. 03 2013 03:39 PM
asdf

Man, I don't know. In my opinion, the parents made a lot of irresponsible and selfish decisions with the odds stacked supremely against them. I'm glad everything turned out okay (even though episode mentions that she will probably face health and mental development problems for her entire life), but to say this child is a statistical outlier is an understatement. For every nice story like this, there's dozens of absolute tragedies. The hard truth of the situation was brushed aside--at most, hinted at--for a flowery story about starting a family. Since the hard truth here is basically awful, I'd have to say it was basically malpractice to make an episode on this topic.

May. 03 2013 03:00 PM
Bob from NH

I had to give this a re-listen after all the negative comments. My first listen was a very powerful experience; I did feel it was a little bit like an episode of a medical show ("will they make it? There's no way! Oh wait! They're going to make it! No wait!... etc.), but an amazing story, and really moved me close to tears several times.
After re-listening, I think they framed the issue very well ethically, scientifically and morally. For example,they bracket the birth date between 22 and 25 weeks. They talk about the line in the sand, and how confusing it is. They relate Roe V. Wade to the history of the issue, and talk about fetal development. And they talk to doctors and nurses.

They talk about how it isn't the baby fighting, but "the parents seeing will" (one doctor saying "that sounds a bit mystical to me). They talk about how it's not the baby but physiology. And how you don't tell a new parent that the baby grasping their finger is just a "reflex". They talk about how it is us putting this idea of fight in the baby. So I don't know why there are so many people that are so angry about that...

As far as people saying "what about adoption" and "what about third world births": I think we should keep in mind that this is part of our society. They aren't saying it's right or wrong, but it is part of our society. Talking about these other externalities is really outside of the scope of this show, isn't it? They could have made a show about that, but they made a show about this.

And why judge people for their very, very personal, probably very hard decisions? It doesn't sound like a very pleasant experience to have been through, and I really feel for these people. Even if they didn't take a path I would have necessarily taken, I feel for them, because we're all people and who doesn't feel for someone going through something hard? Are we all really so divided?

May. 03 2013 01:12 PM
Pete from Myrtle Beach SC

Best Radiolab. Great job guys. Went home an hugged my kids. Thank you Kelly Beneham for sharing.

May. 03 2013 12:45 PM
Truth

Just listen to the rage from the pro-death scum bags.

May. 03 2013 12:37 PM
Stephanie from Dallas, TX

As a new NICU nurse, thank you so much for this episode. Accounts like these help give some perspective for where our parents are coming from. For the listeners who wanted more science in this episode- NICU medicine is an extremely complex, specialized and unusual discipline. Getting into the specifics of mortality and morbidity stats would have taken away from the fantastic story that was presented. It is true, that many NICU graduates face significant challenges after discharge, however the majority of even our tiniest infants grow and develop into beautiful, happy and healthy babies.

May. 03 2013 12:11 PM
Ann from London, UK

What an amazing episode.

The Radiolab team are masters of audio story telling. I loved it (so much that I wrote a blog about it: http://birthgeekuk.wordpress.com/2013/05/03/life-and-death-radio/). Many thanks to Kelley, Tom and the other contributors for their honesty.

Topics which cover the bridge between life and death are naturally stirring and not something often talked about openly on radio (I have professional experience of making radio programmes covering this gap myself, so know that they can create strong emotional reactions. A strong like/hate reaction is often the sign of a well-crafted programme).

Well done to the team. Sending you a bit of radio love from across the pond :)

May. 03 2013 11:33 AM
LT

I thought this episode was bad to the point of being irresponsible. I kept waiting for the science and it never came. At the end when Jad said "there are many stories of babies that don't (make it)..." I thought that we were finally getting to some sort of balance to this story, some kind of analysis, or maybe even a thought about where the science is progressing in this area. Then nothing. What of the vast majority of babies who never have an outcome like this? To present such a stilted, biased, and wholly unscientific view of the medicine around treating incredibly premature babies is hurtful to the families who do have an outcome closer to median. This would be fine if I were led to expect nothing more than a one off human interest story where something incredibly remarkable happened. I was lead to believe that this would be about science and it wasn't at any point. I feel like I wasted an hour for you to finally get to that point and it never happened. I expect vastly more from Radio Lab. Many of your past episodes were fantastic. This episode had vast potential and you never left this family's personal story to explore any of it. I'm happy for this particular family. For the rest of us, I hope this was a temporary lapse that will be corrected by future episodes returning to the level of excellence long time listeners have come to expect.

May. 03 2013 11:12 AM
Max

The implications undoubtedly necessitated this lengthy set up. I'm looking forward to part two.

May. 03 2013 09:03 AM
A mom

I understand some listeners wanting a more science-oriented perspective in the episode and the point about who financially benefits from increases in neonatal science is fair--I know that NICUs can be very profitable for hospitals. However,I think some commenters' complaints are ridiculous.

(1) The contention of kommunic8 that "Talking about ultra-premature babies I agree, it'd be better to use the vast amount on money on rescuing children dying of preventable diseases caused by polluted water and lack of food." In that case, when you get sick, kommunic8, we probably shouldn't treat you since that money could save more lives elsewhere? Or if a child gets cancer--gosh, cancer is expensive. Let's send that money where it can be better used. Type 1 diabetes kids need a lot of ongoing care. How many kids could get clean drinking water with that kind of money? It's not "natural" for such kids to live, just as it's not natural for preemies to make it. You can see this is ridiculous line of argument. This is not an either-or proposition. Yes, kids living in poverty need more help. But this is an issue that in a practical sense has absolutely no bearing on the medical interventions used on premature infants. Insurance companies are not going to send any extra money to fund drinking water initiatives regardless. While premature babies' initial care can cost a lot of money, many can grow up to lead very full and meaningful lives. I am not a disinterested listener, FYI. My twins were born at 28 weeks. While they had a fairly easy stay in the NICU with no surgeries or infections, they would have died without months of intensive medical intervention. They are currently happy, healthy two-year-olds.

(2) There is a lot of judgement and anger on here about this couple's choice to pursue IVF rather than adopt. Many of those who talk about "just adopting" have no idea about how difficult and expensive infant adoption can be--often tens of thousands of dollars, typically much more expensive than initial fertility treatments. There are many more U.S. families wanting to adopt than U.S. infants available. International adoption is typically even more expensive, and the financial structure of it can lead to abuses, with children sometimes sold into the system (see Kathryn Joyce's The Child Catchers). It is true that many American foster kids are waiting for loving homes and adoption from foster care is much less expensive. But, most of these kids are older (with a median age of about 8) and many have faced abuse or neglect which can have lasting effects. Increased adoption from foster care is a good thing for everyone, however this is NOT the sole responsibility of infertile couples. I wonder if Marsha Jones has looked into adopting from foster care? Not everyone is equipped or wants to adopt an older child, and that's okay. Many people (including many fertile couples) want a biological connection to their child, and that's okay.

May. 03 2013 08:59 AM
NCrain from NC

Whoa- moving story. I also had fertility issues, am also a nurse that has worked in NICU and have a 2 1/2 year old daughter. I sobbed reading your very well written account of Juniper's beginning.
Hope you are all doing well. That girl is a fighter.
BTW- my daughter's name is Rain Juniper. :)

May. 03 2013 12:48 AM
Lacey Parr

What a beautiful and moving program. I thoroughly enjoyed hearing this amazing story. Life is a sacred gift and it seems like this has become an issue, but hearing these parents' story makes you realize just how special each life is. Thanks for sharing.

May. 03 2013 12:24 AM
Kevin from Brooklyn, NY

I became a supporting member because I wanted others to have the Radiolab experience of rejoicing in the warm, bright light of scientific inquiry. Well... ? I'm disappointed that there wasn't that. This episode isn't just an ersatz edition of This American Life; it's TAL repackaged for Oprah's cable network. I'm not pleased.

May. 02 2013 11:58 PM
sandy from FL

Your "parasites" episode remains my favorite of all time--'the bitter end' was also excellent. I can't imagine what motivated this version of Lifetime movie abysmal-- What's next? recordings of the voice of god directing medical decisions, millionaires dropping off suitcases of cash to cover costs because they were so moved, lobbyists for 'quiverfull' of babymakers? However you two were 'touched', I hope it was a one-off and you can get back to smart radio productions that illuminate and educate.

May. 02 2013 11:30 PM
marsha jones from Washington

I love RadioLab, and look forward to thought provoking, and occasionally disturbing subjects, which often surprise and always educate, me at least. Like many here, I am disturbed by the singularly one-sided perspective provided in this episode. The subjects of premature birth and preservation of at risk pregnancies "at all costs" is an immense and deeply charged topic which is not well presented in a single program. The depth which was provided for the very real emotion of the struggles and choices was real and valuable. However, the presentation completely elevated the singular and isolated pursuit of parenthood, while ignoring all the other ethical, moral, social and economic responsibilities and considerations involved in these situations. I believe these issues really deserve an airing, to balance the "exploration" of the miracle of parenthood. Not exploring the other aspects of these technological miracles would elevate the "pro-life" implication this episode presents.
How many foster children could be adopted and sent to college for the cost of a single in-vitro fertilization->at risk pregnancy->compromised birth->and extensive neo-natal stay? How many disabled children living without needed services could be provided essential opportunities for independant function for that same cost? How many health providers, social service providers, etc., could be serving the children and adults who are so desperately in need, instead of handholding those who just have to produce from their own DNA?

May. 02 2013 07:02 PM
Hal from Colorado Springs, CO

Disclaimer: My son was born at barely 25 weeks, so I am not a disinterested listener. He had many issues the first couple years of life, but today he's a happy and healthy twelve year old, as were many other kids in the NICU with him. In some ways we were lucky, but then part of this story had to do with the advances in medical technology that have allowed such kids to make it. From reading the comments, I am surprised at the emotions displayed, but then I guess anything to do with this primal of a topic will evoke strong emotion.

For the folks who wish RL to omit topics with any attached emotion (save, I assume, "wonder"), then I think you truly miss the point of such a program. RL is about the intersection of science and humanity. From what I can see, it always has been, since science is carried out by humans for humans, with all of their messy emotions. If you wish to avoid difficult emotional subjects, then you need to stay away from science.

May. 02 2013 05:34 PM
Bill McDonald from Seattle, WA

23 weeks 6 days) What great story...it was almost precisely the experience we had in 1997 (24 weeks 1 day same weight).
We tried to have her for 8 years. The statistics were over whelming and we were informed that we can have her aborted. We had last rites 3 times. Four months later we made it out of the NICU. She has been one of the 1% (that survive and thrive. I wish that I could attached two pictures. She is a beautiful, healthy, 9th grader.

May. 02 2013 05:20 PM
TC

I am a long time listener and avid fan. I have incessantly recommended radiolab stories but I draw the line here. Not only was this one-sided it was flat out misleading. It is may be ok for the parents to think the baby was looking at them (it was not developed enough to be able to see at all let alone have the cognitive ability to "look"), but it is wrong for radiolab to conscienceless promote this view without correction. It is poor journalism to enhance the emotive quality (which was no doubt very high) of the story at the price of misinformation. Don't forget your roots radiolab!

May. 02 2013 04:42 PM
Andrew from Indianapolis

Thank you to everyone involved in this story. My son was born two months early last year, and this story provided me with the opportunity for the first time for it to really soak in how fortunate we are to live in a world in which he was able to survive after just a one-month stay in the NICU. While listening to this story all the imagery came rushing back--the OR, the doctor explaining they wouldn't be able to stop the labor, and afterward the tubes and weeks of angst and love. I've been afraid to go back to that place in my mind because of how scary and emotionally draining it was, but it's beautiful, too. The parents' courage for their family is one of the most beautiful and inspiring things I've ever heard on the radio. Thank you again for this broadcast, I'll never forget it.

May. 02 2013 03:07 PM
Jonathan from Los Angeles

One of the beautiful things about RadioLab is that it can help us find the beauty in the mundane and power in the smallest detail. The nature of science is to question, and in that I found this episode lacking - deeply. Sure, there was pathos here, and an exploration of the techniques used to keep these preemies alive. But where was the why?

Why, for instance did these parents feel the only way - the only way - they could parent was to create another life, at whatever cost. And what of those costs: the real costs, I imagine, all told, moving into the hundreds of thousands of dollars; the emotional costs to them, their families, their baby, the medical staffs? Sure, their story is emotional and touching - but it is also angering. With so many babies in the world without parents, what motivates them to put themselves, their baby and everyone else through this. It's cruel and unnecessary, and in the end rather than eliciting sympathy they come across as deeply self involved and blind to the suffering they created in pursuit of their own singular obsession.

May. 02 2013 01:48 PM
Clayton from Denver

Radiolab you productions are always wonderful and this is a great story to see and understand how precious life is and the miracles that science and will power can provide.

May. 02 2013 11:28 AM

@ Eric-
I guess the entire science of emotions, psychology and mental health doesn't count as science to you.

May. 02 2013 11:24 AM
David W from Madison, WI

This is one of the weakest Radiolab episodes by far. Where are the insights on IVF? Why don't the parents pursue adoption? What are the health implications for premature babies? What causes babies to be premature, and does it relate to IVF? I liked the presentation of the dilemmas for premature babies "survival vs quality of life" but it was ultimately shallow and left a lot to be desired-- and really that applies to the whole episode.

I don't mind a good story, but leave it to This American Life.

May. 02 2013 11:22 AM
Professor Riffs

Where's the usual yin to this episode's pro-life yang? I've listened to every single episode, and loved them, but this one was too much. I certainly hope this Oprah-type scene isn't the new norm.

May. 02 2013 11:21 AM
Jerry from Washington, DC

Should have a disclaimer.

I work as an airline baggage handler, which is a lot like a longshoreman in a bygone generation. When we have downtime I enjoy the radiolab podcast. And, just as many stories will have a disclaimer that "this story might not be suitable for young children," this one probably could have used something that said, "A warning to people in highly macho and insensitive workplaces, this next story will cause you to cry so hard you'll need to hide in the restroom for ten minutes."

May. 02 2013 10:30 AM
Dennis Lang from Minnesota

Just indescribably powerful story! " The nurse said we might want to think about getting a car seat." Brilliantly produced. Thank you!!

May. 02 2013 10:25 AM
Robert from Philadelphia, PA

@ Ricky D from SC

Thanks, I did read the articles, and I stand by my original points. I think they unquestionably pushed too hard for the pregnancy, but more specifically, I think the mother pushed too hard. of course IVF isn't for everyone, I get that, and I respect anyone's choice with how they want to have a child. What I balk at is these parents' projection of their own neuroses onto their fetus and then prematurely born child, and the certifiably unscientific approach Radiolab takes in the way the story is presented.

My ears perked up when they brought on the British doctor who had a preemie himself. I thought that that story was going to serve as the counterpoint - that babies born prematurely die frequently, and that reading signs of life or cognition can be a harmful misreading of the child's medical situation. I was shocked when his story took a radically weird turn. The line that really pissed me off was when he was saying, "Yeah I know that grasp reflex is bullshit and means nothing, but I refuse to treat my daughter like some patient baby I go full doctor mode for."

The contradiction and hypocrisy was galling. These kind of stories are used as fodder for the pro-life right, and are straight up harmful in the real life, grey area bioethics debate that should be going on every day. To the untrained listener, the message of this episode is clearly, "Life is always the better choice, let the baby decide, parents who chose to compassionately cease care are always wrong, and babies have cognitive ability to decide if they want to live or die."

May. 02 2013 10:21 AM
Amanda RN from Florida

This episode was heart warming, but only fluff if not followed up by a detailed examination of what happens to the many many premature children who do "make it" but live with crippling complications stemming from the advances in medicine we see today. Or maybe radiolab should investigate the financial side of it? Who is the real beneficiary of these interventions? The ethics of these risky procedures were skimmed since is appears that this story did have a happy ending. When only stories of the small percentage of healthy survivors are told, it would seem to the public that risking premature birth and supporting premature children has a much higher success rate than it actually does and the ethics of THAT kind of fluff journalism infuriates me. It offended me as well that the nurse in the NICU interviewed said that they don't educate families about infant reflexes. That seems to me also wrong, to allow a decision to be made to essentially torture a baby based on grasping or rooting reflexes. I am glad that later in the episode someone pointed out that ALL of the "proof of life" interactions were merely normal, base reflexes.(that even infant monkeys have.) I am an RN, I used to work with adults in the SICU but I left over some of the same basic moral and ethical conflicts. Death is sad but it is part of life and it is a shame in our culture that we have gone so far as we have to say that any life at all is better regardless of quality of life. Stories such as these only perpetuate a dreamy falsehood and in the meantime earns big big bucks for hospitals, insurance companies and the like. These heroic measures come with a price, is it worth it?

May. 02 2013 09:41 AM
bob from wbur

Radiolab has been such a rich addition to my life, such a stimulating and inspiring teacher. That said and meant, this was the weakest episode for me by far. In fact, I think just about every other episode I'd put in the range of wonderful to extraordinary.

Look, I think Ms Benham and Mr. French are great... and the tale of a premie was well-told. But just to throw in my two-bits, I think the episode had a shot at being as great as any if their story had been but one of three or four.

It occurred to me that a good balancing tale might be a follow-up to anthropologist Nancy Scheper-Hughes work in a shantytown in northeastern Brazil, 'Alto do Cruzeiro,' where the sugar plantations rule and the conditions for most of the folk are so harsh that the infant mortality rate is astronomical, over 1/3. The anthropologist's work is called "Death Without Weeping.' We have this idea that women bond with their children instantly with harps in the backyard, but in Alto do Cruzeiro such an emotional attachment must wait to see if the child will survive. The scientist wonders if this notion of mother-love is at least in some part a bourgeois myth.

And perhaps another story that might have been added to make a better episode would have had to do with post-birth depression. There must be a lot of good science just waiting for the best storytellers of good science, namely you guys, to be told relating to this topic.

Okay, all that is easy for me to say... and i do mean it... for me, this was a weak, the only weak episode. But I'd like to end by saying, Thank You, you've been too good for me not to want to end by emphasizing how great i think radiolab is.

May. 02 2013 08:37 AM
Terry Renaldo

Devastating episode, and so thought provoking. Kelly and Tom's story will be with me for a very long time.

I'd like to also join the chorus of people who are just really confused by the angry commenters below. This was Radiolab at their absolute best.

May. 02 2013 03:26 AM
Henry

Jean, you say you miss the "science" but what exactly do you mean by science?

This episode tackled really hard questions about viability and fetal decelopment and beginning of life. How is that not science?

Would it be more sciency to you if they somehow worked in an astro physicist and sapped the story of all emotional content?

May. 02 2013 03:04 AM
Jean from Rochester, NY

Hey folks, nobody is angry or rageful here as some posters have curiously claimed us negative reviewers to be. We are disappointed because we expect far better from Jad and Robert. This was a heart-warming story, but it belongs on Oprah, not a show that is supposed to be about science. If this is the direction that RadioLab is headed, fine, but I'll stop listening. And not because I'm mad, just not interested in Hallmark stories. This American Life handles this type of material better anyway. Ira Glass never seem to cross the the line into goofy sentimentality. But I loved the old RadioLab and will miss it terribly. Please guys, get your show back on course.

May. 02 2013 01:59 AM
Cendra Lynn from Ann Arbor

I was riveted by this program. Kelly and Tom go into the soul of this border land between life and death.

My daughter was 28 weeks and her first Apgar was 1. Her 2nd & 3rd Apgars were 4 & 8. She weighed 750 grams, about a pound and a half. I only learned of her existence 5 weeks after her birth when she'd already survived. She was a non-white female which I'm told have highest chance of surviving. This was 1986 so technology was less advanced.

When she was about 3 she asked me, out of the blue, "Mama, why you not come get me in da hospito? I waiting and waiting for you." I explained I had not known she was born - clearly an insufficient answer. When she was 7 we discussed saving severely premature babies. I said I didn't think they should be put through the torture, but I was very glad they had made the effort for her. She agreed completely. In her are the two sides to this issue. Not all questions have answers, and Juniper's amazing survival is a wonderful example.

Having been a psychologist working with dying and grieving for 40 years, I have learned that the grey area between life and death is much greater than the Western world believes. Juniper took her parents into that realm and they, thanks to RL, have taken us there. It is only in that space that life/death decisions can be made. Everyone in that space with Juniper was part of the outcome. Thank you so much.

May. 02 2013 01:54 AM
JSjs

This episode is a really great exemplar of the fact that humans are not at all rational when it comes to babies and procreation. Everything is emotion and magical thinking, and it is incredibly powerful, way more than rationality for most people.

(I honestly think that it will be mankind's need to procreate, and not our propensity to kill each other, that is our undoing. We will simply keep creating more of us until there is no way to sustain us all. But I digress.)

Anyway, I think that the place this episode really fails is that it does not seriously and scientifically examine the irrationality of the situation, nor does it examine the big picture morality of it. I must admit that, as much as I love the show, Radiolab has been drifting away from science a little too much lately.

Also, c'mon people, adoption!

May. 02 2013 01:06 AM
Sal H. from Hamden, CT

As a father who is going through the same turmoils but in an early stage, this podcast has given me and my wife the spark of hope that we need to hold on, no matter how hopeless or slim the odds may be. Radiolab you have done what my friends and family members couldn't, you have given me hope by example. Thank you very much for this beautiful and heartwarming story, it has come to us at the exact moment that we needed it to. I and my wife will forever support your program and all of your future projects and stories. I hope that you can continue to touch the lives of your listeners.

May. 01 2013 08:49 PM
Michael

This story is much more suited for this American life. .. and i use the word "story" loosely

May. 01 2013 08:29 PM
kommunic8 from melbourne

Talking about ultra-premature babies I agree, it'd be better to use the vast amount on money on rescuing children dying of preventable diseases caused by polluted water and lack of food. Same thing for the money spent by developed countries' governments to improve the life of increasingly obese populations.

But talking about *your* premature baby, nothing would be too expensive or would seem to require too many resources.

But this is beside the point, because this wasn't an episode about therapeutic obstinacy.

May. 01 2013 07:46 PM

Quite a bit of rage here I definitely wasn't anticipating...in this and other recent web comments relating to child-having, I sense a divide brewing between - and I will try to put this as uncontroversially as possible - the crowd of folks that thinks that the experience of having children is one of those "inalienable rights" kind of things and should be guaranteed for the individual at whatever cost to society...and those folks that think the decision to have children and procreate should really be weighed against the needs of society at large, and that this biological urge to have children is no more valid than any other gratification-based urge we control using the powers of reason. Buried in here are implicit assumptions about the soul, the nature of life, God, etc.

As someone who essentially agrees with both sides of this issue - in other words, the well-being of the future generations depends on both the stability of the growing environment both at home (life is precious, so none of those "go to jail for having too many kids..or worse!" horrors in some dystopian, overpopulated version of our future) and in a larger community sense (any "be fruitful and multiply" belief system or ideology which relies on an outdated agriculture-based feudalist economy to justify maximum procreation for the ulterior purpose of growing the ranks of religionists and believers must be tossed out and never looked back upon) - I think this piece was more about the relationship of parents to their children at the earliest stages of development than it was about any implicit value judgments on the way people deal with prenatal life & death situations. Of course the piece had to end on a positive note! Would any of you have forgiven the show if this story ended in the infant's death?! That would have been more of a bummer than a StoryCorps bit!!

However, I do have a question:

What was with the stomach surgery?! You go into the stomach surgery bit, and you say the insides basically "fell apart" when the surgeon touched them. Then you say that the baby survived the surgery..somehow...barely, I guess. I don't get it! How did this baby live? Does it have a new stomach somehow? Did it grow one? Or is it a question of lifestyle adjustment to an intestine-less life? Because it sounds to me like the baby's stomach was basically useless tissue mush! Please elaborate!!! (Or did I miss something in the show?)

May. 01 2013 06:56 PM
Casey from Denver

I think I've teared up about 8 or 9 times in the past decade. At least 5 of those had to be while listening to radiolab. One was this episode. Excellent hour

May. 01 2013 06:19 PM
Topher from San Antonio, TX

It's really easy to see what listeners don't have kids...

May. 01 2013 06:00 PM
Bob Smith from South Carolina

@Taylor from Arlington

You say the episode "undermines science's place in tough decisions."

And Eric, "the whole point to rational understanding is to try and leave all your preconceptions and personal bias to the side."

But that's just it. Science can only get you so far. Science can give you the facts, but we are emotional creatures. To deny that side of ourselves is to deny part of what makes us human. Living solely on science or logic alone is no better than making decisions solely based on emotion with no regard for the facts. Science and emotion are both part of the equation; neither side is complete without the other, and neither is superior to the other.

May. 01 2013 04:55 PM
Andrew from Davis, CA

Geez, everybody calm down. This is radiolab doing what radiolab does. Take a contraversial or interesting or difficult question, and present it in a moving and creative way. All the wrath and joy and other strong emotion I'm seeing posted is being brought in by the posters, especially because reproduction and babies have been made a hot button issue by our political system. Enjoy it or don't, that's up to you, but don't razz on radiolab for presenting you with something unexpected. Thanks radiolab crew.

May. 01 2013 04:46 PM
Ricky D. from SC

@Robert from Philadelphia (and maybe some others):

Read the linked article. At one point she says:

I knew we had defied the natural order in our determination to have a child. Through so many in-vitro procedures, with so many tests and needles and vials of drugs, we'd created life in a petri dish. To be given a child just long enough to watch her die felt like punishment for our hubris.

I was crying when I asked Tom, "Did we want her too much?"

Maybe they did push too hard for her. Maybe they should have looked into adoption. (Maybe they did and she doesn't mention it. I don't know. We don't know.) But you can't undo that decision. What matters is, "Well, we have this baby now. What are we going to?" Faced with such a question, they had some gut-wrenching decisions to make that I can't even fathom, and in their case, things turned out extremely well in the end.

As a bit of a side note -- my wife and I struggled with infertility for a number of years. We know what it's like to desperately want a baby, but after struggling for so long we were faced with the questions, "WHY do we want a baby so badly?" "What are we willing to do to become pregnant?" What would be the consequences of those actions?" "Where do you draw the line?"

We looked into fertility treatments but decided NOT to go that route. No matter how badly we wanted a child, if we couldn't get pregnant without "extraordinary measures" (as the doctor called them), we'd either remain childless or adopt. We knew that wasn't the right route for us. But we also had a number of good friends who did have fertility treatments of one kind or another (either drugs to make them ovulate more or IVF or some other means) and their pregnancies were fine and their babies were healthy. Just because we chose not to doesn't mean it was wrong for them to. And just because you need help getting pregnant doesn't mean you can't carry a pregnancy to term or you shouldn't try. Modern medicine can do all sorts of amazing things, individuals need to decide for themselves the costs and benefits of taking advantage of these methods.

May. 01 2013 04:40 PM
Nan from Reno

Beautiful story. So many of these preemie stories do have unhappy endings, and I feel bad about those parents' heartbreak. But so great to hear such an amazing story with a happy ending!!

May. 01 2013 04:27 PM
Eric Englebretson

@Amy - you bring up an important point: "can science have an emotional side?" The answer is: no, it absolutely can not. Will we get emotional about almost everything (science included) - yes, but the whole point to rational understanding is to try and leave all your preconceptions and personal bias to the side (which is almost impossible, but the attempt needs be made.)

@All The Supporters of this episode: What is making people so frustrated is that Radiolab is supported by the National Science Foundation - and the Alfred P Sloan foundation - organizations that try and cut through things like superstition, mysticism, projection and misplaced correlation. I am not trying to downplay the importance of poetry, emotion or storytelling - all of that is also an important part of our culture. Jean brings up a critical failing of using these poetic glasses to look at everything: we just don't have the resources.

Radiolab was supposed to be one of the places that illuminates and educates us - not throw a sugar-coated fantasy at us and say "Are unicorns real!? This desperate and panicked person things so! You make up your own mind!"

May. 01 2013 04:12 PM
Taylor Ryan from Arlington, VA

This reminded me of the old podcast in which Robert got very religious on us and he tried to tell us a story from the bible. I wish you wouldn't bring topics like this up in part due to the stir and fuel it provides to the types of people that can't view things objectively. This is firepower for any pro-life nuts out there that now can point to this as a good reason to bring a suffering life into this world and hold it there... I wish, that you all had held back from sharing this one... I think it misrepresents the amount of early preemie babies that turn out okay and it undermines science's place in tough decision.

May. 01 2013 02:46 PM
CB in PDX

One of Radiolab's best episodes. No, it wasn't all statistics, research and facts, but it seems to me that science is, at least in part, the intersection of the human mind and the physical world. We constantly experience and interpret the world around us. Since we are human and not just a bio-logic board, science inevitably impacts who we are emotionally, mentally, spiritually. To pretend that we can divorce rational thought from the rest of what it means to be human is intellectually dishonest.
What we heard in this wonderful story is how parents, doctors, and nurses took what they knew medically and wove that information with their own humanity to evaluate and make decisions about the care of a little girl. Well done. I might even start supporting WNYC to make up for Eric's cancelation tantrum.

May. 01 2013 02:43 PM
Nicole from Nashville TN

Thanks for this piece!! Last July we had a premie at 27 weeks so this interview really hit home.

May. 01 2013 02:36 PM

I thought this was a touching episode. Yes, emotional- which seems to have rubbed many people the wrong way based on the comments. Why can't science have an emotional side? Why can't we see the agony behind what are truly scientific questions? We can consider what we each would have done/would do... but this is one couple's journey through very tough decisions. All the while, grateful that the science exists to allow such choices.

May. 01 2013 01:12 PM
Jen from WA

Beautiful story, great discussion, thanks again Radiolab - no need to look into it any further than it is - a family's experience of what they went through. Either enjoy it or don't, but I don't see the need for judgement. There are so many different points of view, be open to them all, kind to everyone, even if you don't agree with some of them. That's my 2 cents, best of luck to these parents, thanks for sharing your human experience and allowing us a peek into it.

May. 01 2013 12:48 PM
Bob Smith from South Carolina

As a father of a beautiful young girl, this really touched me, and i cried through nearly the whole episode. (In fact, had to stop it at a couple of points and come back to it.) Thank you, Radiolab for putting this show together. Thank you for giving us a glimpse into the lives of these people. As many of your shows do, it raises a lot of questions and doesn't offer easy answers, and it shows two sides of a very touchy subject.

On the one hand, you know that the doctors' dispassionate observations are true, and if you were an outside observer, the decisions may seem simple and straightforward. However, as a parent, it's much more complicated. You're attached to your child. You want to fight for your child. You want her to win, to live, to thrive. You want to see her grow up and experience the outside word, to play, to laugh, to fall in love. You want her to experience the best life has to offer.

Listening to this episode, i couldn't tell what the outcome was going to be, but i found myself cheering for little "June Bug" to pull through. i could see a lot of myself in Tom and a lot of my wife in Kelley, and wondered what in the world we would do if we were in their shoes. Hopefully we'll never have to know that pain first-hand, but thank you for giving us a small taste of what that must be like.

May. 01 2013 12:35 PM
Alina from MN

I have to agree with Eric, Jean, Evan, and Robert. I also had to stop this episode halfway because I couldn't bear it. Then I skipped to the end only to learn the obvious: happy ending, baby lives, great.

First, this episode is wholly unscientific and I learned next to nothing from it. Radiolab used to inspire me to read up more on the subjects I didn't even know I was interested about. This one was a story, and storytelling is best left to the storytellers - This American Life and the Moth both fit the bill.

Second, the takeaway from this episode seems to lean towards the "life by any means", which interestingly contradicts "The Bitter End" episode's message. In that episode doctors stated that they would like to receive minimal treatment and die peacefully when time comes instead of doing any number of invasive and painful medical procedures. Obviously, this is my opinion, and I am not trying to pass it off as a fact. However, had this baby died, would the parents and doctors be happy they made the decision to involve as much medical help as possible? As said on the podcast, many more babies die. Miscarriages are rather common.

Third. Adoption. Why was adoption not an option? I listened to a very moving story about a couple in a similar position trying to conceive, but adopting in the end. The story is here: http://risk-show.com/podcast/mani-sheriar/ . What is great about Risk is that it indeed a storytelling show, not a 'science' show.

I'm very disappointed with Radiolab at this point, and this is the last episode I have listened to. I almost wish I could enclose a note with my contribution to MPR: "Transfer of funds contingent on that $0 of this money goes to Radiolab." The previous podcast "Distance to the Moon" was also a disappointment. Yellow Rain was an absolute pain to listen to.

May. 01 2013 11:59 AM
Tom

I have to be honest, when I read the comments on the Radiolab site I'm always baffled. This is not a political story. To call it pro-life or pro-choice is unsophisticated and insulting to the Radiolab team, who I hope aren't reading these comments.

May. 01 2013 11:46 AM
cass from New Orleans

Not your best Radiolab. I stopped it midway because I WANTED to.

May. 01 2013 11:29 AM
Kelly McBride from St. Petersburg, FL

Why does this story make some people so angry?

May. 01 2013 11:06 AM
Robert from Philadelphia, PA

I listened to this yesterday and was sort of flabbergasted. It
s a really sad story, the whole way through. I'm glad it ends well, and for sure, these folks are the lucky exception. Some issues I took with it though:

1. This is Radiolab, and we learned very little about the ethics or science around neonatal intensive care aside from some British doctor contradicting himself.

2. The show would've been immensely better if they got a psychologist on to talk about projection. The parents in this case were projecting everything onto their child, both in the womb and once it was in intensive care after birth. Especially the mom. All the talk about the baby "wanting to live" and "fighting" gave me shivers. So... babies who die don't want to live or they're weak?

3. Let's be frank, this mother probably was a bad candidate for pregnancy. They couldn't conceive naturally or even through IVF, so she had to use an egg donor. And then she couldn't physically carry the fetus to term. It's heartbreaking, I know, but at no point did they consider adoption? And you can tell that she pushed the father into it all too, I don't fully buy his 'come to Jesus' moment where he reevaluated their relationship during the breakup. I read the whole thing as a baby-crazy woman with some potentially unresolved issues stemming from her own childhood projecting onto this fetus/NICU baby... at the expense of the child herself and her husband.

4. Kudos to Radiolab for including, "Many more babies die," towards the end, but come on, seriously? The only thing editorially people will take away from this story is that EVERY baby is a 'fighter' and every parent should do all it takes to get that preemie to live, when in fact it's a lot more complicated. Bioethics is touchy, I know, especially when it comes to neonatal care, but this whole episode sounds like it was funded by a grant from some right to life group.

May. 01 2013 10:56 AM
Evan Sten from New York, NY

So, I'm halfway through the episode that I promised my wife I wouldn't listen to. 23 weeks, 6 days. That's 2 weeks younger than Daniel. Daniel's birth on October 2, 2006 wasn't joyous. It was full of fear. I got to hear him cry and watch him be measured before he was wisked to the NICU. I visited him every day. Occasionally, I rounded with the team to monitor his progress. I wasn't a neonatologist or even a pediatrician but I was a doctor and I wasn't going to relinquish my medical knowledge just because I was also his father. Everyday, multiple times a day, I updated my family and the world on his progress. His blog at http://mrsteinsblog.blogspot.com still ties my life to his. I still remember his birth and memorialize his death. And, when they are ready, I will explain to his younger brothers that they had a beautiful older brother and he was an incredible fighter but sometimes fighting just isn't enough. Ultimately, Daniel didn't make the decision, we did. But we know it was the right one. And, I think he does, too.

May. 01 2013 09:33 AM
Mike from Virginia

@Eric - I think you heard in this episode what you wanted to hear. What I heard was a very clear statement in the show that *parents* often see will, resolve, and "wanting it" in their premature babies' movements and responses, but *doctors* see these things for what they really are: physiological signs of relative health and by extension viability.

I heard essentially the same thing regarding "leaving the decision up to the baby." Thinking of it this way was simply a way the NICU nurse and the parents could say "let's see what this baby's chances look like before making a decision," without actually saying that. I didn't think the show tried to make any claim that anything more complex was going on.

For my part, I really enjoyed the side by side treatment of both the emotional and scientific views of the same process. I thought this was the best podcast (of all of them, not just RL) I've listened to all year.

May. 01 2013 09:24 AM
mr. bzzz from bzzland

good work, challenging issue

May. 01 2013 01:46 AM
Jean from Rochester, NY

Hallelujah! It's a RadioLab miracle! Baby born prematurely with telepathic powers! Understands the english language on a fifth grade level! Communicates to parents and doctors that she wants to live, so they save her. A less exceptional preemie might not have inspired such heroic efforts, but then that would be her choice to die - right? Is this Radiolab or Coast to Coast with Art Bell? And even more disturbing, I think I sensed an old-school Catholic pro-life agenda lurking somewhere under there.

This seemingly pointless episode could have been redeemed if it included a discussion on the ethics of allocating vast amounts of healthcare resources to "life at any cost" endeavors, or what happens to babies born under less fortunate circumstances, like in most of the world. Oh wait a minute, I'm mistaking Radiolab for an intelligent, illuminating, and educational program. Like it used to be. Sigh.

May. 01 2013 12:36 AM
Shu

I haven't heard this episode yet. Reading the comments, I'm a bit scared to- I have a 3-year old, we got lucky, she is healthy, and now- with dear friends who have had horrible experiences- I count my blessings everyday. To Eric- I am sorry. You are correct- there is no way to account, track, explain, any goddam trick to cope with loss, and I am sorry for yours. That said, there may be others who need to hear this.

May. 01 2013 12:34 AM
Annie from Sioux Falls SD

I loved this episode!!! Thank you so much for creating this beautiful piece of work.

May. 01 2013 12:05 AM
Tammy

That was such a beautiful story. Thank you so much for this wonderful episode. I am still in tears and smiling.

Apr. 30 2013 11:31 PM
Johnny from New York

Hey Eric from Omaha... you mad, bro? Are you waiting for us to pretend we care? JHC -- enjoy this episode for what it is: an amazingly moving journey through a couple's experience; a piece of audio poetry. It's one of the best episodes we've had this year. Thanks again Jad, Robert, and all the other staff. Superb work.

Apr. 30 2013 11:15 PM
Preegerc from Oregon

Thank you for bringing this story to us.

Apr. 30 2013 11:04 PM
William

Unbelievable episode. Moving, beautifully edited and fair.

Apr. 30 2013 11:01 PM
Eric Englebretson from Omaha, NE

This episode was neither educational, nor was it useful. It did not promote understanding, or contain even a shred of honest communication. This episode was wall-to-wall emotional manipulation and false correlation. But the real sin here - the thing that had me furious the entire episode, mad enough to write this comment and cancel my WNYC support - is that this episode implies that preemies who die somehow just didn't "want it" enough.
"Leaving the decision up to the baby?" How dishonest and trite. The decision was made by countless uncontrollable circumstances and complications and - in this case - these parents won the lottery. Most parents in this situation won't, the baby will die, and god help them if they are a fan of Radiolab and they get to feel like the child died because they were deficient parents somehow. Everyone else is left with the misunderstanding that preemies and newborns are much more complex than they actually are.

Apr. 30 2013 08:15 PM