Stunted growth or ethical medical care?

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.