There is a baby in Canada who was described by the media as dying. Her parents wanted her to be an organ donor. In fact the parents want her organs to go to a specific child in the hospital. Horrors! The baby didn't die! In fact the hospital was going to use the non-heart beating protocol and did. But the baby didn't die. Therefore her organs were not taken, as is the proper protocol. In fact the baby was taken off the donor pool.
The disability rights community is questioning this decision. In fact the Not Dead Yet blog has a post that the child may not be terminally ill, but disabled, and that the apnea may go away as time progresses. On this personal note, I have a grand baby who has severe apnea, and has been monitored since birth for apnea. His parents respond to a monitor's alarm by stimulating the baby, who then begins to breathe. The pulmonologist on my grand baby's case, says that most likely by 10 months of age, the apnea will disappear. This grand baby was a premature baby. Not terminally ill, but has problems. Certainly, his parents would not consider organ donation. In fact, they consider this baby God's gift to them, even with problems.
More on this case has to be reported. Is this child really dying? Or is this a quality of life decision? The first duty of medicine is to do no harm. Once the distinction between doing no harm and a quality of life are blurred, we all know whose side the medical decision will come down on.
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