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Waiting for Life to Begin

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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 [10]

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

@atxandme

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
pink123

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

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