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A Future You Can't Control

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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. But, thanks to a lot of technology, they found a way to a baby. Then, about halfway through the pregnancy, the trouble began. Neonatal nurse practitioner Diane Loisel describes helping Kelley and Tom make the most important decision of their lives. And Nita Farahany helps Jad and Robert understand the significance of viability, and how technology has influenced its meaning...making a difficult idea even harder to pin down.

Read more:

Fetal development, a week by week guide from the Mayo Clinic

Comments [22]

Tee from IL

As I read comments regarding the healthcare cost as being selfish, I just have to shake my head. These parents paid for insurance and they used it exactly as it is meant to be used. The problem is not with them, it is with the system. Even post ACA, we see people that can't afford health insurance, we see inflating medical costs-- that is the issue, not what these parents have done.

And, yes, this was an expensive procedure, but most life fighting procedures are. There are certainly cancer patients that have paid more. Some of them don't beat the odds, but since they were already living, we don't think their spending is wasteful. People with unhealthy lifestyles can lead to many expensive healthcare costs like lung cancer, diabetes type 2...

Honestly, this is a very slippery slope, and likely a question without an answer.

Aug. 22 2016 12:08 PM
jane from New Hampshire

Riveting story. I had premies (twins) at 34 weeks - a world away from Juniper - but the story had my husband and I captivated and me in tears about our own journey. Our girls are thriving and we just celebrated 1 year. We have come a long way since babies born at 36 weeks didn't survive (Jfk and Jackie O., to name one famous couple)! It's not fair for anyone to pass judgement on this story as they have not walked in those shoes. As to what I would or would not have done had our girls been super premie, I just don't know. What is the 'cost' is actually immeasurable. Certainly we have the medical technology that we keep people at the other end of life alive for a very long time - but with poor quality (think pressure ulcers, foley catheters, hospital infections). Our ICUS our full of these patients - I have no more right to judge those familes for their decisions than Juniper's parents for their decisions. Many ethical issues abound, but until we walk in those shoes, we should not judge.

Dec. 09 2015 09:17 AM
Pete Rudkins from Barrie, Ontario, Canada

I commented earlier, and really feel the need to comment again.

The conceit of telling this story is blowing me away. This is not a "miracle baby" story. A miracle baby story is one where a poor infertile woman gives birth to a premature baby in her home, and the baby lives. It is a miracle baby because it is a miracle available to anyone.

Because this couple had extraordinary luck and privilege, and the fact they feel very, very blessed, does not make this a "miracle baby" story, let alone a story even worth telling.

The birth of their daughter is special to them, like their trip to Disneyland, but it is not special for the rest of us. For them to think it is in any way a universal story testifies to monumental conceit.

This is a facebook story. (I really need an explanation or an apology for this story.)

Dec. 09 2015 09:13 AM
K514ma from New Jersey

I listen to Radio Lab all the time. This story really grabbed me and held me tight. I was a pediatric nurse for the last 40 years. I have worked in Tertiary Care centers in Boston and New York, in ICU, pediatric clinics and most recently in public schools. "Miracles" such as the one so beautifully retold do occur. They are just so poignant.
Of course there are times when they don't, despite the most sincere prayers, dreams and hopes. We cannot always predict which very frail, critically delicately balanced child will survive given the right help at the right time. Sometimes that help is mechanical ventilation or medicinal intervention. But sometimes there is help that comes from somewhere or someplace that we do not understand.
I am so grateful for your witness, retelling, the exchange of human experience, the offering hope to others who are struggling.

Dec. 07 2015 09:19 PM
Elizabeth K from cleveland, Ohio

I just heard Junipers story on the 5, December - 2015. At this time of year when we need joy and a miracle...Junipers story was uplifting and made me happy that the higher power is still in charge

Dec. 07 2015 04:02 PM
Annette from New York City

Whatever my share of the cost of Junper's survival, count me unreservedly in.

Dec. 07 2015 07:40 AM
Val from North Carolina

I am so sorry for the negative comments you are receiving here. Everyone has a right to their own journey, technologically assisted or not- that is up to all of us to choose. I know these folks would not eschew other technological advances that enhance their lives on a daily basis, and to me this is absolutely no different. I know natural healing has saved my life, and so has surgery, I needed both in order to be here. I have so many health conditions since I was a child, and just went more into debt to freeze my eggs to give myself another possible chance at a future family. Percentages are low but I am living proof that "miracles", or the low stats, do come true. Its not about money or any of this other stuff. Life is not fair or equal. If I don't get to live out my dreams of having a child due to $, health, medical technology, or otherwise, I will continue the quest to create a family another way. No need to shame anyone at any walk of life for their circumstances or experiences.

I was riveted to every minute of this radioshow, and loved coming here to find out more and see Juniper. Wishing you all much health and love. Thank you for sharing your touching story.

Dec. 06 2015 10:04 PM
Rosita from Honolulu

What happens if you don't have the funds to do exactly this procedure? Are we taxpayers be burdened by it? Just wondering....

Dec. 05 2015 04:02 PM
Jake from Truro,MA

Surprised and disappointed to hear this 'Hallmark' story on Radio Lab. Was there no discussion of what this cost- or did I miss something? For balance please do an hour long segment on a family whose baby didn't survive, or one who survived with multiple complications. The way this story is framed as a 'miracle' belongs somewhere else- not on NPR.

Dec. 05 2015 02:19 PM
Celia from Westchester, NY

My husband and I lost our second child and only daughter at 23 weeks in 1992. We were not given the options for neonatal experimentation available today. It was completely heartbreaking, but after willing myself to listen to this podcast now many years later, I feel that the decision to let nature prevail was by far the more humane one. What suffering this baby must have endured. The world does not need more people, and there are so many healthy babies that cry out for love and care. What a shameful use of money and resources can be my only response.

Dec. 05 2015 12:55 PM
Kate from Colorado DSN

The power of the human spirit is amazing. That this baby survived at 23 weeks, 6 days was nothing short of a miracle. When Kelly & Tom first heard her beating heart in utero, their hearts told them to fight for her. This story is a beautiful reminder of what a gift every life is.

Apr. 16 2015 01:05 PM
Johan Bengter from Sweden

In Sweden they can save premature babies as early as week 21. My twin sons was born week 21 and 5 days estimated by their weight of 498g and length. One died after 12 hours but Knut survived and is now soon 5 years old with no handicaps besides asthma like issues when he catches a serious cold. He was able to come home on the day he was supposed to be born. I give thanks to God and Sweden's health care system which is free for kids. More than half of the premature babies born in week 22 is saved at Sweden's top hospitals.

Feb. 24 2015 04:17 AM
Judy Hines from Bloomington, IL

I am a RAdioLab freak and this was one of my favorite programs. Just spectacular and now with the video showing Juniper at almost 3 makes me happy as can be.

Apr. 23 2014 06:57 PM
Pat Fogo from Sheffield Lake, Ohio

A very thought provoking subject. I am happy Juniper made it, and that they had outstanding medical care. Regardless of how she was conceived, apparently she was MEANT to be here!

Apr. 17 2014 10:03 PM
patricia e dewey from Tucson,Az

My comments are for the family of Juniper who was born a premi and had such difficulty in establishing her presence on this earth not to mention the cost to the medical/insurance/private sector community. My daughter is also named Juniper and her nick name is Junebug. Juniper is pregnant with her second child as I am writing this note. I did email her with the NPR channel RadioLab segment today as I found it extremely interesting. It is wonderful that baby Junebug survived and the family did not give up on her. I thank my higher power that this special baby did make it home to the family that truly does love her and will be there to assist her in her developement.

Apr. 14 2014 12:12 AM
laFemmeH from Oregon

I meant to add a link to the comment i made a little while. It was my first comment and suddenly it disappeared on me. Quoting from the article written by the mother who is a journalist in Tampa Bay:
"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."
and also:
""You can't think about that right now," the financial specialist said. Babies born this young almost always exceeded $1 million in medical expenses, and if they had private insurance, they frequently hit their plans' lifetime caps. Most ended up on Medicaid. I was halfway to a panic attack when she said, "Well, this is amazing news." She swiveled toward us in her chair. "It's only going to cost you $400."

http://www.tampabay.com/news/health/medicine/as-weeks-turn-into-months-in-nicu-micropreemies-parents-wonder-what-does-a/1265977

Sep. 28 2013 06:12 PM
laFemmeH from Oregon

On my station i just heard this segment. My comment is in response to David Simmons' comment with which I agree. I tried to find out what the actual cost of this "miracle" was and the mother mentioned it herself in her Tampa Bay article. The financial staff of the hospital told the parents that the cost of the entire procedure normally was over $ 1 million. The parents only had to pay $400 which was the copay on their Blue Cross policy. In other words, it is the Blue Cross policy holders who all pay for this "miracle" via higher premiums.

Sep. 28 2013 05:59 PM
Doctor Jack from Hawaii

Sorry to have to tell you this but all your problems regarding this ordeal were of your own making. You should have never resorted to the various fertility treatments you subjected yourself to. What you were doing was over riding mother nature's wisdom. Instead, if you had PROPERLY prepared your body for pregnancy, you, indeed, would have provided new life with a much improved environment wherein you would have become pregnant, carried your baby to full term and would have had no problems. But instead you allowed medical "science" to interfere, not just pre-pregnancy but all along the way. It was never revealed what caused the intestinal anomalies. What was given to the baby after she was delivered? How was it given? The only drug mentioned was antibiotics which was stupid beyond words so I'm guessing other threatening substances were also administered as well. Both parents were, and, more than likely, still are under an intransigent medical spell from which there is no escaping so I won't even get into specifics. And the bit about vaccines to avoid communicable infections, like I said, you're totally submerged in and surrounded by a medical spell from which you will never escape. I'll give you a hint, medical students aren't necessarily taught the highest and best approaches to healthcare but what will bring in the most money. That being a fact, trusting these "doctors" was a continuation of the mistakes you made pre-pregnancy, continued to make post-pregnancy and are surely still making today.

Sep. 28 2013 05:36 PM
Will from Nashville, TN

I absolutely loved this podcast until the political comments about Chick-fil-a. I am actually on the mother's side, as I believe in marriage equality (which puts me in the minority in Nashville, TN). But I didn't wanna hear about politics or even think about politics after such a powerful, beautiful story. I think it's crazy that anyone would stop attending a fast food restaurant because the CEO of the company expressed his opinion on anything. Does she do background checks on the CEOs of every restaurant/business she visits? Because they all have CEOs with opinions. Good luck shopping at McDonalds, Walmart, Target or any other large corporation and not finding dirt that offends you. I realize it's irrelevant to the rest of the podcast, and I wish her family well, but hearing anything political (especially something like the hot-button Chick-fil-a controversy) has a way of striking a political chord in people that is entirely unnecessary to this story. Why include that comment in the broadcast, Radiolab? The last thing I want is for my close-minded friends boycotting Radiolab for supporting gay rights.

May. 14 2013 06:08 PM
Raketemensch from Earth

I hate it when you guys leave obvious questions unanswered.

What happened with Cupcake?

May. 07 2013 11:04 AM
David Simmons from Portland, OR

The story of how one couple was able to leverage their affluence to gamble (hundreds of?) thousands of health care dollars in their own interest while millions of others are forced to go without basic health care. The most offensive 59 minutes I've heard on the radio: neither science nor journalism, but arrogant schmaltz. I wish their family well, but will continue to dedicate my life and work to those who cannot afford to buy miracles.

May. 04 2013 01:28 PM
Melanie from Denver

Radiolab why do you have to make me cry so hard??

May. 02 2013 02:42 PM

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