Sleepy:
Would you prefer children in such circumstances to die due to complications from their defects, rather than having them euthanized? Obviously we don't have such a system in place (and probably never will), but I'm just curious as to whether you oppose it. After all, it can prolong the child's pain (painkillers aren't perfect) and forcing the parents to endure that is cruel.
Frankly, I'm not sure how to implement a law for euthanasia whose wording would limit its use to the most extreme cases. What criteria would the child have to meet? Lack of a brain? A certain level of incurable pain?
I would prefer the option of euthanasia being on the table, and definitely for cases such as those. It's a really difficult thing to even contemplate what might lead to that, in light of the current socio-political barriers to progress in that direction here in the States. Medical ethics review boards already try to deal with situations like this, both for severe malformation at birth, and severe, essentially untreatable illness and mortal injury in older patients. The litigious nature of our society regarding what are seen as questionable medical practices in these cases is nearly as bad a block to humane treatment as are religiously influenced political objections. American society is just not ready to really face cold hard facts for the sake of providing genuine mercy. Our laws still reflect the, "It is in God's hands" cop-out. De facto cruelty is allowed for the sake of avoiding the least possibility of future abuse, like the enforced "eugenicide" Mitloehner wants.
As it is, standard hospice care is based in the total disconnect of; it's okay to let a terminal patient die of dehydration and starvation, but no, we cannot euthanize, even though from the patient's standpoint, that would be the kinder thing to do, by far. I felt anguish watching my mother and my aunt die under hospice care. They each had DNR's on file and orders to cease prolongation or intervention, but because of the way the system is set up today, my aunt suffered in fear and still had pain over and above what the maximum legal morphine dosage could dull, until she finally lapsed into coma. My mother was fortunate, in that her brain was so damaged by the time hospice was allowed to take over, that she was oblivious to any mental suffering or pain. She had steadily deteriorated downward to a 5 on the Glasgow Coma Scale, where a score of 15 is normal consciousness and brain function.
It does seem that lacking any meaningful brain function, or being born with just a barely functional brain stem, is a reasonable criteria for ethically administered euthanasia. And there are several conditions, the worst I can think of being deep brain, or thalamic damage, leading to unending and completely untreatable agony, where euthanasia should be regarded as being ethically necessary.