The Women's Bioethics Project Blog pointed to the msnbcmsn.com article on a severely retarded (with a "profound, irreversible developmental disability") 6 year old girl whose parents have asked doctors to treat with high doses of estrogen and a hysterectomy to keep her permanently small and to avoid puberty.
I agree with the family and the ethics committee's decision.
Someone recently encouraged me to follow my instinct toward what he called "maternalism." But I don't think I came to this conclusion just because I believe that I know best.
The question comes down to whether the girl's right to life and liberty are being infringed. Another way to put it would be to question whether the parents are acting in her best interest.
If as the article reports, she's always going to have the mental capacity of an infant, then maintaining her body at the size of a child is not depriving her of the right or ability to determine her own fate. And the intention is evidently to keep her healthy and alive and for the parents to be able to take care of her in their home.
I remember the controversy in my hometown back in the '70's over a hysterectomy for a girl with very severe mental retardation. And I've seen lots of families struggle to continue caregiving as their children grew and entered puberty. Surgery and hormones carry risks, but so would the prospect of mom and dad having to choose to institutionalize her because they can't take care of her physical needs.
Saturday, November 04, 2006
Stunted growth or ethical medical care?
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2 comments:
While I 100% agree with their motives, and I applaud the family for the love and care they're giving their daughter under very challenging circumstances, I'm leery of this sort of chemical mutilation. If it ain't broke, don't fix it.
Are there less drastic means that would enable them to continue to care for her? If so, why aren't we, as a society, providing them?
I can't think of another way to keep her small enough for Mom and Dad to lift and carry her.
The chemicals are short term, I believe - only until the growth plates are closed (I could be wrong).
I'm concerned about the hysterectomy, but it's safer than years of hormonal supression.
I've watched so many families struggle through the years, as the strollers get bigger and bigger. The transfers from bed to chair more difficult, both due to the larger body of the child and the older body and fatigue of the parent. Baby sitters disappear when the toddler is a full-size teen or thirty-something.
Next, comes the worry about who to care for her when they are no longer able.
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