Una Salus Lillius, on Jan 5 2007, 11:00 AM, said:
Above all, do no harm.
Making life more "convenient" for the parents by deliberately stunting a girl's growth is monstrous.
Lil
It actually wasn't for convenience - that's something the press made up.
There's a history of over-large breasts (breast-reduction-sized) and breast cancer in the family. Can you imagine being continually strapped in across your likely huge breasts? They didn't do a mastectomy on her - they removed the breast buds before she actually grew breasts - and it was a minor surgery.
One of the biggest problems with severely handicapped kids (and this kid is at the three-MONTH level at 9, and completely helpless, fed through a gastric tube, unable to move or speak - about the only thing she CAN do is cry when she's in pain) is that it's so hard to shift them around - they kept her smaller so they could still take her everywhere, because they believe that the stimulus of being able to change locations and do everything with the family that's possible for her is necessary to her wellbeing. As often happens with really severely handicapped kids, the only reliable caregivers in this case have been the family - and she would have grown to about 5'6", which would have made it impossible for her family to do simple things like get her in the bathtub, which she can only use laying down (she can't sit up). Neither would the two grandmothers, who are also her caregivers, have been able to lift her. It would have taken two family members, or a special sling, just to move her.
As for the hysterectomy, they hoped to keep her comfortable by ensuring that she didn't have periods - since she can't communicate, it would have been hard to know what kind of discomfort or pain she might have suffered during her periods.
It's not something I would recommend for every severly disabled child, but the parents and the hospital ethics committee thought long and hard before doing these treatments, and I really believe, after reading the parents' blog, that they were trying to do what was best for her, not what was convenient for them.
(Can I also add that the term "pillow angels" makes me want to puke? Gah.)
I work around children like her every day. It's very hard to know when they're uncomfortable, and they're dead weight - hard to lift even when they're small. I would not do it to my child (and I thank God that I never had to deal with a child this handicapped), but after reading what the parents and the doctor had to say, I can't condemn the parents either. It's really easy to judge these people, isn't it?
Here's the parents' blog:
http://ashleytreatme...paces.live.com/
(Edited to add: I see Cheile beat me to the link.)
Edited by Rhea, 05 January 2007 - 09:51 PM.