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—Given the possibility of improvement of apnea over time, why is ventilator assistance being withdrawn?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.