A radical treatment to stunt a 9-year-old disabled girl's growth stirs a deep ethical debate.

The Houston Chronicle ^ | 5/1/07 | Sam Howe Verhovek

[Thywillnotmine]

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 right where they place her, usually on a pillow.

Her parents say they feared that 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.

And so they decided to keep her small.

The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4-foot-5, and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would have attained roughly average height and weight for a woman — 5-6 and about 125 pounds.

But Ashley's parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can still carry her.

The girl's treatment has involved a hysterectomy, surgery to remove her breast buds, and subsequent high doses of estrogen.

High-dose estrogen was used occasionally in the 1950s and 1960s, mostly on teenage girls whose parents were concerned about the social stigma of being too tall. The drugs could stop a 5-9 girl from becoming, say, 6 feet tall.

As that stigma has gone out of fashion, so has the treatment, medical ethicists say.

But Ashley's case involves an entirely separate ethical realm, that of whether a severely disabled person's life might be improved by having his or her growth impaired.

[pgkdan]

"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties"

That was my initial reaction. But on further contemplation and reading I've changed my mind. These parents have a severly disabled child that they must provide care for and they've found a way to do that and keep her at home. I think that this was done out of love and with Ashley's best interests at heart.

[sweet_diane]

I agree pdkdan. My mother had a cousin in a similar condition born back in the 30's. Her body grew and it was difficult, especially back then, for her parents to care for her. They were fortunate enough to afford in home help, yet my great aunt and uncle were her main caregivers. She lived to be 40. One thing I can say with certainty is she was a very loved child. Their lives revolved around her and her mother, a woman of small stature, loved nothing more than cuddling her.

I learned alot about motherhood from watching my aunt take care of her child. A smaller body, no cramps etc may have improved her quality of life (which wasn't bad since she had plenty of grasshopper pie, which she loved!). I can't disagree with the decision Ashley's parents made.

[WideGlide]

These parents have a severly disabled child that they must provide care for and they've found a way to do that and keep her at home. I think that this was done out of love and with Ashley's best interests at heart.

What's the next step in this saga? I can imagine with horror what they may do to facilitate moving Ashley around when they reach their golden years. "Dear, what's say we just clip those pesky arms and legs? They just keep getting in our way and she's getting so heavy."

[Thywillnotmine]

Slippery slope... but I recall recently a couple was convicted of child abuse when they put their kids in cages at night "for their own protection", to "stop them from wandering". We used to drug the elderly, and tie them to their chairs, to keep them quiet (I hope we don't do this still). Where does the line get drawn between convenience for the caregiver and the true 'best interests' of the dependent?

[spectre]

Another question might be what kind of quality care would the child receive in an "institution", compared to the care she is receiving at home?

sw