An ethical question

Fascinating article in the Seattle Times yesterday about a profoundly disabled child being treated at Children's Hospital in Seattle.

This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.

Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over, or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel," since she stays where they place her, usually on a pillow.

Her parents say they feared their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.

So they decided to keep her small.

In an unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Children's Hospital & Regional Medical Center in Seattle and the parents involved are describing how Ashley has received treatment over the past few years designed to radically stunt her growth.

The easy reaction is outrage--"How dare they do this to their daughter!"--but I'm not sure. My wife's cousin has severe CP, and it's become nearly impossible for her family to handle her because she's now in her late twenties and is a big, big girl. Trying to move her from wheel chair to bed or vice-versa is physically demanding, and everyone in that family has the aches, pains, and bruises to prove it. If the treatment does no other harm, then maybe this isn't a bad thing.

There's more here from the Scientific American magazine, the parent's blog, and the London Guardian.