Thursday, April 09, 2009

Is Child Organ Potential Donor Not Really Dying? Not Dead Yet Raises Important Questions

I recently reported on the case of a baby in Canada, described in the media as dying, whose parents wanted her to be an organ donor. The non heart beating donor protocol was attempted, but the baby didn't die, and so she was taken off the donor pool as is proper ethics in organ transplant medicine. The parents are upset by this and want their baby's organs to go to a particular child in the hospital. The post was about how this isn't right and that the entire system of organ transplant medicine depends on ethics, proper triage, and altruism to be successful.

But now the disability rights community is raising a red flag alarm. Not Dead Yet's blog has an extensive post that the child may not be terminally ill, but disabled, and that the apnea may go away as time progresses. This raises very important questions. From the NDY blog:

From where I sit, the hospital other professionals commenting on the story have a lot of explaining to do. Here's my starting list of questions I want answered:

--How does this child's disabilities differ from the majority of non-terminal children with the same condition?
--Was the possibility of treating the apnea ever seriously considered?
--Given the possibility of improvement of apnea over time, why is ventilator assistance being withdrawn?
--Is this child really "dying" or is this a "quality of life" decision? Shouldn't we try to be clear about which type of situation we're talking about?
These are good questions, not accusations. Some might say, "What business is it of yours?" The proper care of infants and their protection is everybody's business, that is to say, it is a societal obligation. I hope that we learn more about this situation in the days to come.

Good for Not Dead Yet for all it does to ensure equality for all people with disabilities.

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4 Comments:

At April 09, 2009 , Blogger Lydia McGrew said...

I had thought of this as well. This child is by the doctors' own admission only partially ventilator dependent anyway. How does this equate to "dying"? It sounded questionable to me. There was something incredibly macabre about their waiting for the baby to fall asleep so that they could stop ventilator support and harvest the organs. Kudos to the baby for staying awake!

 
At April 09, 2009 , Blogger SAFEpres said...

Go Kaylee!!! Yes, I agree, good for her for staying awake. NDY seems to have it right. It didn't sound right to me, either. Needing a ventilator or respirator while asleep certainly doesn't equate to "dying." Someone from social services should step in and say no, and possibly take custody away from these parents and the hospital so that the baby can be placed for adoption and get the support she needs.

 
At April 09, 2009 , Blogger Lauren said...

This is tangental, but mention of a canadian baby made me think of Baby Faith. She's a Canadian baby born with Anacephaly. She's now 7 weeks old and does many things that comfound the medical establishment.

I know that using the organs of living anacephalic children has been debated, and I think this case adds another layer to the debate.

Anyways, her website is http://babyfaithhope.blogspot.com

The mother has wisely chosen to disallow comments at her site.

 
At April 10, 2009 , Blogger angel said...

Well I can tell you that yesterday the child's father expressed anger at the "flak" they've been getting about "wanting their child to die". He has also made a statement criticizing the hospital.
One has to wonder what they've been told by doctors about Joubert Syndrome and why they went public in the first place.
Here is a brief article about a woman whose son lived to 9 years of age with the same condition and at the severe end of the spectrum:
http://www.680news.com/news/headlines/more.jsp?content=20090409_173250_6080

 

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