Lilavati, it is sad that the major organs are not viable. I think if that happened to me I would want as much as possible to be donated.
It is sad, but no real need to express it to me. It didn't happen to me or anyone I know. I just wrote a paper about it. The paper was a challange, but not a personal trauma.
Or maybe it was. It was the hardest paper I've ever written. Not because the topic was hard, or the law was hard (as a policy paper, I needed to lay out the law, but that wasn't tough). It was long too, as law school papers are. No, what was hard about it was the question.
Sometimes, with adult organ donations, the organs are removed while the body is still, biologically alive. Basically, the person is declared brain dead (because they are) and they take them into the operating room and remove the organs while they are still hooked up to the life support. In other words, if you really want the image, they remove their beating heart and breathing lungs. It sounds horrible, and in many ways it is, but the person is legally dead, and being brain dead, isn't aware and isn't getting better, ever. And the organs are in very, very good shape, and save many lives.
One of the issues addressed in the paper (there were others) was whether anencephalic babies should be declared legally dead, and, just as some adults are, used for organ donation while still attached to life support. Let me emphasize right here that the only scenerio in which I considered this situation is where the parents give their fully informed consent. Right now, anencephalic babies are not legally dead until they stop breathing. Partially, this is because they are not, technically fully brain dead.
This was the hardest question I have ever addressed, and I took a lot of ethics classes. I paced around the courtyard for hours, chain smoking, while I thought this one through, with a pile of books sitting on the wall that I kept checking. I'm sure people thought I was nuts. I consider it a basic ethical principle that you do not use people as a means to an end. Anencephalic babies may not be, really, people, but they are human, and they SHOULD have been people . . . it is a tragedy that they are not.
However, organs for infants are exceptionally rare. Most babies that need a transplant die waiting, all the more so in this age of specialized car seats. Infant organs are precious, because they often save mutliple lives of babies that would die but for that transplant.
But there is a huge relucance to declare anencephalic babies brain dead . . . one, because of the technical definition (they have function in their brain stems) but also because of public outrage, including that of fanatics who demand treatment for all babies . . . often the same people who oppose all abortion, no matter how dire the circumstances. And as we all know, these people turn violent. BUt there is also deep discomfort among doctors and ethics committees. It feels wrong. But then there are the parents that want to save a life or several lives, out of their tragedy, and are traumatized further when the organs can't be used.
I won't say this is the hardest decision I've made, because it was hypothetical. But it was hard. I didn't like the possible answers. I finally came down on the side of: if the parents give informed consent and the baby is authentically anencephalic, it should be permissiable to declare it brain dead and harvest the organs, and where necessiary (and in many cases it is not, because it relies on doctors to determine when dead occurs, and what the definition of brain dead is) amend the laws to permit it. I did not, do not, like this conclusion . . . but the alternative, that otherwise healthy babies that could live to adulthood (admittedly on immunosuppressant drugs) and have children of their own, and love and laugh and cry, would die as infants for lack of those organs . . . which the anencephalic will not live long enough to use.
Since I've put this out, and it is related closely to the threads original topic . . . I guess . . . discuss?
As for working with DS kids, they've made a lot of progress . . . partially by not writing them off. Although the ones that do really well, are often so-called mosaics . . .people with two genomes due to a merger of embyros in the womb . . . DS mosaics often do well because they other genome was not DS.
