Why they stunted their daughter's growth

Parents of the "pillow angel," the severely disabled girl who underwent controversial surgeries to keep her small, give their first interview.

Published March 13, 2008 10:40PM (EDT)

I'm all for the progress that medical technology can bring, but sometimes the combination of new available therapies all wrapped up into one needy child can leave me as speechless as a stoned surfer on a summer day.

Wednesday CNN published an interview with parents who subjected their daughter Ashley to a series of growth-stunting therapies and surgeries to keep her forever small. Since the controversy about Ashley broke last year, this is the first interview given by the parents, who maintain their anonymity. Between 2004 and 2006, doctors at Seattle Children's Hospital removed Ashley's breast buds and performed a hysterectomy, as well as administered hormone therapies that would prevent maturation. The result was "successful": The 10-year-old with a brown pixie cut and hazel eyes has already reached her full size at 4 feet 5 inches and 63 pounds. She will never grow womanly curves or get any bigger or heavier.

Sound perverse? I was ready saddle up my high horse, but judging from a distance is so dang easy. Ashley suffers from severe mental impairment -- she can neither eat nor sit up, much less talk or walk. She can't even hold up the weight of her own head. Doctors guess that her intellectual capabilities approximate those of a 3-month-old. Her parents call her "a pillow angel," a term they coined. She is forever trapped in the mind of an infant, yet she is expected to "enjoy" a normal life span.

In addition to the parents, CNN also quotes a number of experts -- from bioethicist Arthur Caplan to cerebral palsy survivors who consider the "Ashley treatment" ethically unforgivable and a terrifying precedent for other children with severe disabilities. They resort to phrases like dehumanizing, mutilation and "playing God" -- phrases that I too would be tempted to use if it didn't seem that for Ashley, a woman's body would afford no benefits and many drawbacks.

The parents argue on their Web site (quite convincingly, to my mind) that such "treatments" were not elected for the convenience of the caregivers but for Ashley's long-term quality of life. The parents contend that as a fully grown woman Ashley would be more vulnerable to bed sores, pneumonia, bladder infections and scoliosis, as well as the discomforts associated with menstrual cramps or having large breasts strapped into wheelchairs. Perhaps most significant, being smaller allows Ashley to be included in more family activities. (A friend's severely retarded brother grew to over 200 pounds and became essentially homebound, watching television 24/7. Though his mother was devoted to him, she couldn't physically manage him.)

Other less sacrosanct ethicists like Peter Singer have endorsed the Ashley treatment. In a 2007 New York Times editorial, he wrote: "What matters in Ashley's life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying ... Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

So far we've embraced medical procedures that improve lives, even when they are radical. But stunting disabled children for their own good raises the uncomfortable truth: Medical technology has evolved to keep these children alive -- now will it evolve to create artificially permanent children?

By Carol Lloyd

Carol Lloyd is currently at work on a book about the gentrification wars in San Francisco's Mission District.

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