Return Home

Waiting for Life to Begin

Back to Episode

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 life hung in the balance, and Keith Barrington helps us understand how our newest technologies open the door not only to hope, but also to a pain that we, as humans, have kept hidden for most of our history.

Comments [19]

Toni R. from New Jersey

Heard this story this a.m. on WNYC. I will admit that it did strike an emotional chord. But then I began to wonder, "How much do 4 fertility procedures, etc. cost? What about the cost of the Juniper for her stay in the hospital?" My hair nearly stood on end. And I am torn, because my roommate has worked with kids in "the system" for her entire working life. I understand the desire to birth one's own progeny, but I also think of the *thousands* of children who are thrust into, grow up in, and age out of the system. I think of the limited dollars spent on their needs. And how much less, over their lifetime in the system, will be spent on on child in the system than there has been (and probably will be) spent on the subject of this story. Why didn't this couple--whose male counterpart already had children form a previous relationship--not adopt?? There are so many children in the system, from infants to older children. Why not take that desire to parent, and fulfill it with a child already here who likely *really* needs parent, and not just caseworkers and all those he/she will meet throughout their time in the system?

As human beings with free will, each one of us has the right to reproduce...but should we just because we can??

I was given something to think about this a.m., but I'm not sure I enjoyed the emotional manipulation...

Dec. 16 2017 02:05 PM

I sat in my car for 29 minutes to hear the end of this story and let me tell you it's 21 degrees out tonight but it was so worth it to hear her little voice at the end was worth it. Great parents and I hope she grows up happy and healthy. I actually run a group home for mentally challenged adults and often wonder if their parents had to make difficult decisions.

Dec. 14 2017 11:13 PM
Eric Nelson from California

My Juniper is named Zoe, and she's perfect, too. She was born at 24 weeks and 1.5 pounds, just a bit more than Juniper. We got the same scary straight talk from the doctors and rode the same roller coaster. I've seen the other side, too. We lost her older sister who was born at 22 weeks. There was nothing that could be done, so the doctors didn't even try. The difference is stark. Zoe crossed the line of possibility, and our story had a happy ending. I think it's hard to really understand the desperation of the NICU if you haven't been there. It changes you deeply. I'm grateful for the 4 months of excellent NICU care that made my perfect first grader possible. It wasn't cheap, but she's priceless.

Sep. 22 2016 10:16 AM
Julie RN from Illinois

All well and good, but most don't come out this well. I was a level 3 NICU nurse for 16 years. Most of these kids have issues. A lot of the parents say nobody ever warned us. They were. I had a trauma conference and learned how trauma affects your ability to take in information. It would have helped. I have seen so many nurses upset when the families do not appear to understand what we say. It is hard to say your baby is dying every day and we are doing CPR every day and the parents do not understand. I see some of my "saves" and the outcomes are not good. Please do not get me wrong. I loved the NICU, I felt we did great things. Most babies did well, the ones who did not make it. Sometimes that is not a bad thing. we all went home and cried at times. a friend did a study for her PhD thesis. It compares how new nurses feel about saving very tiny very premature babies and how older nurses who had been there for a while felt. The vast majority of the older nurses felt guilty. I am one of them. I am truly glad this baby is doing well. Maybe you should profile someone who's child did not do so well. thanks for letting me comment.

Apr. 22 2016 12:24 AM
Pete Rudkins from Barrie, Ontario, Canada

I love you guys, but this story ticked me off, to the point where I question the original journalists' and your intentions.

I am Canadian, so maybe I am reading into this story a narrative thread, or sub-text, that was never intended, but it smells a great deal like a pro-life concoction. That is my read at my most cynical.

If not, then it definitely falls into the "American Dream" camp: "this too can be you if only you work hard enough"...There are aspects of this argument appearing elsewhere in the comments, so I will zoom out to take a broader swipe.

No, this story is not about a "dream" being realized based on a healthy can-do-ism. It is a story about tremendous, stupendous luck nestled in a bed of privilege that is out of reach of probably 99% of Americans who are ever confronted by this situation in your health care system, just as financial independence is out of reach of 99% Americans when confronted by your modern economy.

Why do Americans continue to tell themselves stories that justify an unjust system, based on anecdotes of the lucky and the privileged?

Worse still, why do Americans persist on believing them? The power of mythology.

Dec. 08 2015 06:58 PM
CNSRN from California

I completely agree with Bec215 and wanted to add, the telling of these stories skews the public mindset on the idea of these miracles being the norm. This carries several consequences, not the least of which is that impacts a parent's decision making abilities in these devastating situations. It's hard enough to make the choice to let your child go as a parent, but if the media continues to tell these miracle stories without telling the rest of the story (high death rates, and significant medical and/or cognitive abilities among survivors), it implies the survival/success rates are much higher than they are. And then what about the poor parents whose child does not survive? Are they failures? Why not their child? We have to present all possible scenarios, in a sensitive manner, and ensure all those struggling with the decision are at least provided facts on overall mortality and quality of life from our news outlets.

Dec. 08 2015 12:00 AM

Parents suffer immensely through the process of infertility and fertility treatment, and by continuously presenting a stream of 'miracle baby' stories, the Media create additional pressure on parents who face this type of choice to feel there is no choice.

While a compelling story, it's irresponsible of RadioLab to not tell the full story of what happens to the majority of micropremies who survive - to to 27% they didn't mention. A single sentence disclaimer at the end of the story that "these two babies had good outcomes, but many don't" is not enough.

Remember the nurse who said "you can wait to decide, see how she is when she comes out"? Remember then what happened... the baby was *immediately* wisked away from the parents, before the mom even saw her, to the NICU. THERE WAS NO CHOICE. The doctor was right - it's impossible for parents to go into a NICU, see a breathing fetus on the verge of becoming a baby, and say "take out the breathing tube and let her go".

Every pair of parents take their own journey, and they need the support to make the decision that is right for them, without judgement.

Here is the OTHER side of the story... the story of the 27% who don't die, but aren't the 20% who turn out ok... I'd like RadioLab to tell her story, too, in the spirit of balanced journalism. This mother is courageous for allowing a public discussion.

Dec. 06 2015 01:10 PM
Joan P from St. Paul, Minnesota

The comments about lattes and SUVs ignore one vital difference between the expenditures. You have the right to buy what you want with your money, but the cost of a sickly premature baby is huge and is not borne (no put intended) by the parents. Because insurance or the government cover the cost, those who ultimately pay the price have the right to voice an opinion. It is not in society's interest to subsidize these babies. If you want a baby so bad, then you pay for it. There's already 7 billion people (and growing by 72 million a year) on a planet that only has enough resources for 2 billion. The more babies we add, the more suffering, war, and hunger there will be.

Dec. 05 2015 03:48 PM
Mikey P from Tampa

This story hit home. I was premature, weighed almost two pounds, spent nine months in an incubator. Parents show me a picture of me in a christmas stocking every year that they put me in while in the incubator. This was...36 years ago. Now I have a daughter of my own, and I often wonder what my parents experienced - they were very, very young (16 and 18), in a time where, under normal circumstances...chances are a newborn in this state would be let go. March of Dimes provided the funding for my life. Now, I can look at my daughter, and the bond that is there... listening to this story - makes me want to give my mother a hug and a my pop a handshake. Thank you for sharing this. Please donate to the March of Dimes. And All Children's. They fund life and the love that we all give our kids, and the opportunity for that love to go around.

Ironically...I also live in Tampa. :)

Jan. 09 2015 10:51 AM
Patt Demetri R.N. from CA

As I recall Canada embraced the new technology for premies until after building special care facilities for them realized the drain on resources and the mostly poor outcomes. I think they closed most of the new facilities with the intention that if the child was not viable enough to be transported then the child was not viable.

Oct. 13 2014 01:53 AM


First let me say that there are sensible questions to be asked about how a culture uses its resources for medical care. A handful of the comments so far have actually asked some of those questions without targeting the parents with hollow outrage.

But many of the comments chastising parents for the cost of NICU care, while hypocritically ignoring the cost of end-of-life care and all the other myriad life-saving or life-prolonging procedures that are far more common than NICU and against which NICU is a drop in the bucket, those commenters are getting a little emotional high from shaming someone else through the safe remove of the internet. The neurochemical reward for self-righteousness is well studied. It has all the easy triumph of a bully that chooses an easy target without the drawback of any pain of conscience. Some have appealed to God. Some have appealed to their own arbitrary definition of what is natural...a definition that no doubt puts their own lifestyles on the side of right. Each of these is an appeal to a sock-puppet authority they themselves define to avoid turning their outrage inward and asking whether their Prius or iPad or lattes are worth the number of children they could have vaccinated against malaria. The worst part of this is that they're effectively using the category "children in Africa" as a moral pawn they themselves have no intention of actually giving up their luxuries to help. By venting their rage outward, they avoid self-loathing.

Doing something useful in their community and owning up to the fact that they choose luxuries over the lives of children they've never met would require the shamers to face their own hypocrisy.

Apr. 25 2014 01:47 AM
Sadie from NJ

An amazing story. It was so compelling when the doctor described the moment the baby opened her eyes, and she decided they had to do surgery. Also, an interesting digression from the mom when she had to show her political correctness in the midst of a deep, emotional retelling of this story by saying that they went to Chick-Fil-A BEFORE the anti-gay event. So sad she felt compelled to add that comment.

Apr. 14 2014 10:38 AM
atxandme from ATexas

Out of all the comments written about 26 Weeks, I thought the most accurate point to all the nay-sayers was: "How many babies can we vaccinate if we divert funds from daily lattes, luxury SUVs, and unlimited data plans? What are our priorities?" If you really care, then put your money where your mouth is. Sheesh - give this couple a break and go out and do something useful in your community, business, church, or even own family. Make a difference rather than just blowing hot air.

Apr. 13 2014 03:10 PM
Mary Jo West from Phoenix, AZ.

As a longtime professional broadcaster, I must tell you that this was one of the MOST POWERFUL radio stories I have ever heard. Congratulations to the producers/editor/hosts for bringing such honor to capturing the remarkable journey of Juniper and her parents.

Apr. 12 2014 11:44 PM

Dan & TKwerz are having an on-going conversation that it being catagorized as "emotion vs. science', with others contributing what seems to me as pretty extreme comments on both sides. It seems like both side are forgetting the basic rules, trying to understand the issues from both "too close" and "too far" seeing the other person's point of view. Science can take a back seat when it is YOU facing the decisions. Yet I thought I heard both legal and moral debate on the issues. And emotion can take a back seat to the basic issues of science and finance.
I also heard concerns for the strain on the health care system - and, unfortunately, blame being given to our extreme costs due to issues like these. There were those who tried to put in proportion, but regrettably few who questioned the system, the basic flaw. We all need to read "The Healing of America: a Global Quest for Better, Cheaper, and Fairer Health Care" by TK Reed, I believe, again. There are better systems and they cost less without, I believe, sacrificing quality health care. I helped negotiate with the State of Alaska for a improved Health Care Plan - and though we could have saved them $100/month for 650 people, they refused because politics made it impossible to join a Employer-Union Health Trust.
This show highlighted every one of the issue, and I'd just like both sides of the debate, allegedly over emotion vs science, or possibly Abortion Rights over Rights of the Fetus, to remember that the entire debate doesn't fit into one 1-hour show - not, probably, 24 shows. Great job, RadioLab

Apr. 12 2014 06:00 PM

This was a gripping tale that keep me on the edge of my seat. It was an hour long but it went by so quickly. The use of the baby's heart beat was brilliant and the message was great too it came from both sides of pro-life and pro-choice.

Apr. 09 2014 06:18 PM
Karen from Kent, CT

This story mirrors ours so much -our daughter was born at 25wks, 1lb 13oz and was doing ok for 14 days and then got NEC. We got the call at 2am they were doing surgery, and she lost her entire large intestine. She stayed in the NICU for 5 months, but is now a thriving healthy strong 12 year old. She is an amazing girl with incredible perseverance. Thank you so much for this story.

Nov. 08 2013 06:48 AM
Ariel from Maryland

Kelley, Tom and Juniper are not alone. My son was born at 25 1/2 weeks, weighing 1lbs 2oz at Johns Hopkins in Baltimore. When he was 5 months old I signed a DNR, as he was coding everyday, which sucked for him, sucked for us, and super sucked for the doctors and nurses involved. As I was holding him after that I told him what I had done, and that he had to pull himself together and quick f&*@ing around. When he was close to 9 months he was transferred to Mt Washington Pediatric Hospital, which is a long term care facility. Shortened story: he came home for the first time shortly after his second birthday. He is now 12 going on 13, and about to finish 6th grade and move into 7th at a public middle school. Miracles abound!

Jun. 10 2013 10:17 AM
Chelsea from Texas

This is the most amazing story. I am inspired by the strength of Juniper, Kelley and Tom. I never comment in online forums but I was touched by this miracle.

I wish the family the best. Juniper is a strong survivor whose strength is unparalleled.

May. 03 2013 10:57 PM

Leave a Comment

Email addresses are required but never displayed.