This little girl will never mentally or expressively develop past a 3 month old baby.
What are your thoughts about the situation? What would YOU do if it was your child?
Parent vs. Public Opinion
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SICK!
When I read about this my exact thoughts were “I am grateful that I am not in a position to have to make such a critical and terribly difficult decision.” I also felt that way when a family member of mine had to make a difficult decision regarding a complicated pregnancy. I felt that way over the whole Terri Schiavo case and I felt that way when I read about several families going overseas to seek treatments from stem cell research.
I agree with C-dub in that I wouldn’t want to have to make that decision….but that is the safe answer. On another level, seeing these special children come into the hospital in their teens+ and still have periods, boobs, pubic hair, and bigger bodies to move around, lift, diaper change, etc. I have to say, I don’t really blame these parents for the decision they made.
I keep thinking, as morally questionable as it might be, her parents love her. Her parents want to keep her and care for her as long as possible. Who are we to decide that her parents are wrong? Even in the name of disabled rights, aren’t they the ones who love her most? My other argument would be that it would have been impossible for this little girl to make it to her current age without significant medical intervention at every point in her life. Is this just an extension of medical intervention? As medicine advances, prolonging the lives of all kinds of people with all sorts of complications, what will the ethical implications be of extending life at all costs?
It is obvious to me that these are loving parents who are only thinking of their daughter’s quality of life. This procedure has made it possible for her to be cared for by those who love her most and has made it so she can live a somewhat comfortable life. This girl isn’t neglected or abused — only loved and cherished. Don’t we all do everything we can to make our child’s life the best it possibly can be?
What gets me is that the public is all in uproar over these parents who love and take care of their daughter but what about the abused, neglected and sad children that have horrible parents that don’t take care of them. Where’s the uproar for those children?
I don’t think those parents were being lazy or unethical. As her parents, they have the right to take care of their daughter as best as they see fit. She only had the brain capacity of a 3-month old baby! Someone in the article rebuked them by saying they are taking away her future rights, like maybe she’d want to have sex someday but couldn’t now that she had that surgery. Seriously, she can’t even lift her head or eat solid foods. I can’t even imagine how difficult their decision was to make. I believe they considered everything that was entailed, but felt it was the best for her quality of life. Instead of judging their decision, we should be grateful that we don’t have to make that decision ourselves.
LRH–I totally agree with your comment. . .that’s what I was thinking. . .at least these parents are there (BOTH of them), and they obviously care for her very much, and want to be able to do so.
I am very uncomfortable with where the line is going to be drawn here. When you read the comments of the hospital’s ethics committee chair, he claims the girl is incapable of suffering indignity, which thereby justifies these proceedures. Seems to me people who are incapable of defending their own dignity are the ones most in need of defense. I cannot imagine facing these decisions, but even that wording implies there was a NEED to make a decision. These are elective surgeries altering her natural development, not standard actions in the developmentally disabled community by a long shot. The family claims to have been shocked by the “uproar”, which to me implies that the doctors involved did not do a good job of preparing them or explaining the magnitude of these steps. They published a paper, and should have made clear to the family that this was a new direction in the care of disabled children. Sorry for such a long comment!!
Just came over after seeing your comment over at Organized Chaos- I have read some on this family, and completely support them! It’s really easy to give our opinion, or to condone people for their actions, but the fact remains that they made a very painful and agonizing decision. I would probably do the same thing in their situation!
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