This story here is heart wrenching and disquieting to me at the same time. It must be so hard to have a baby who can’t breathe–a baby who is not doing well.  

Baby Kaylee continues to defy the odds this morning, breathing on her own for a second day after she was removed from a respirator in anticipation that she would become a heart donor for another infant.

But I’m quite uncomfortable with the juxtaposition with the other struggling baby who needs a new heart–and the idea that Baby Kaylee should become an organ donor so young. Thoughts?

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Andrea just got more uncomfortable: Read here:

Kaylee, his six-week-old daughter who a day before had been administered the last rites so her heart could be transplanted to another child at Toronto’s Hospital for Sick Children, looked up and gurgled Except for the heart-shaped Band-Aid holding a tiny breathing tube in her nose, she looked healthy and pink and hairless – not unlike her now famous father, who has been defying the hospital and holding public press conferences as he lobbies doctors to let his daughter’s heart go to Lillian O’Connor, who desperately needs it.

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Patricia adds: I have some sympathy for these parents – as appalled as I have been by some of the remarks the father has made, including the loving statement that there is no way they would have brought Kaylee into the world if her disabilities had shown up in a pre-natal ultrasound. That said, it wasn’t Kaylee’s dad who brought up the idea of the withdrawal of nutrition and hydration (i.e, starving Kaylee to death). What I’d really like to know and what I suspect we’ll never get is a full accounting of the part of the hospital and Kaylee’s doctors.(Part of the reason for that is patient privacy, which is not an illegitimate concern.) I’d sure like to know who told these parents their baby’s condition was “terminal.” Did anyone at any time actually offer the parents some information about Joubert Syndrome and suggest that maybe they talk to some parents who are raising a child with Joubert? Who suggested the withdrawal of nutrition and hydration? Why were they told (as they alleged in a radio interview yesterday) that as Kaylee’s condition worsened, decisions about their child’s care might have to be made for them? Who at the hospital raised the issue about the cost of the medical care required by Kaylee, resources that might better be used by another child? In short, just what the hell is going on at that hospital anyway?