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A Declaration

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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 and Kelley turned to their baby for help. Seeing their daughter for the first time, they looked for her to "declare herself." That's a phrase that comes up again and again to help guide decisions in Neonatal Intensive Care Units. But parents and medical professionals have very different ideas about what the phrase really means. Nurse Tracy Hullet and Neonatologist Keith Barrington describe the difficulty of interpreting the fuzzy boundary between a baby's strength of will, and simple physiology. Meanwhile Kelley and Tom are left to wonder, and wait.

Read more -- articles from Ketih Barrington and his wife and colleague Annie Janvier:

Ethics ain't easy: do we need simple rules for complicated ethical decisions?

I Would Never Want This for My Baby" (PDF)

I Think It Is Time to Stop (PDF)

Pepperoni Pizza and Sex

Comments [4]

Pen from Australia

Our daughter recently had a similar ordeal with her first child, in labour at 24 weeks, water broke at 24.4 Born at 24.6 weeks. After 25 weeks the doctors take over and do all they can to revive the baby. In the birthing suite awful decisions were asked of her and her partner, whether to resuscitate or provide palliative care. The doctors and midwives (absolute stars) were incredibly caring and compassionate but the statistics were provided for our daughter and partner to read and consider, it was grim reading. Our daughter and her partner had two different thoughts (it is not something one tends to discuss as a young couple happily expecting their first child). The surgeon told if our daughter had a caesar it would be a classical c section and would compromise her ability to have more children and the baby could still be born dead. There was risk each day of extreme, life threatening infection. The labour was induced, the baby was born unassisted, the team of doctors were clear no instruments could be used to get the baby out (who had then decided she wasn't really in such a rush).
They had agreed to resucitate; the baby made the decision for them. Born very much alive, quite cross and making tiny crying sounds she is now in intensive care. We don't know what the future holds, at the moment she is doing well and we hope that continues as her life develops.

Jan. 23 2014 04:27 PM
vicki from cornelia, GA

I was late for dinner with family because I couldn't turn off the radio and my makeup was washed away with tears. We take so much for granted. The most powerful part of the interview was the second opinion from the doctor who recommended that the baby be the one to decide what the course would be.

Oct. 06 2013 09:51 PM
eiaboca from NYC

First of all, this was such a lovely story, and thank you for sharing it.

One thing I noticed in the story was the continual separation of "reason and logic" from "emotion." This is such a deep dichotomy in our thinking that it's sometimes hard to see around it. And I do think we should try as hard as we can to see around it.

It isn't like our emotions descend upon us from nowhere! They co-evolved with our reasoning capabilities, and I do not believe that one could work without the input of the other. At the very least, emotions did not have a such a negative impact upon our survival that they were removed as a factor in the decision-making process. But I think the story lands much more in favor of emotions than this bare bones depiction entails.

Sucking and grasping are of course instincts, but emotional reactions to such need not be arational/irrational---because indeed, again, our instincts co-evolved with our emotional reactions to them. Listening to those emotions is often a good choice.

Spinning off of this, it might be interesting if you all at Radiolab looked into Antonio Damasio's work on emotions; he thinks they are the precursor to all consciousness.

Jul. 04 2013 11:40 PM

So this was certainly a very moving story but im afraid i stopped listening after it was said that the parents would have the choice to keep or kill their child after it had been born depending on whether it was limb and blue or crying like a normal child. This is discrimination you cant assume it will be miserable because its disabled, i know plenty of happy disabled people who would be offended to hear this. The parents shouldn't have been given this ridiculous choice in the first place, if the baby is alive everything should be done to save it, the cut off point should be fertilization. To say it only becomes human at 24 weeks is stupid there's barely a difference two days prior to the 24 week mark. You cant just juggle with a human life like you own it.

May. 25 2013 06:13 PM

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