April 24, 2024


 A profoundly retarded little girl and her loving parents are at the centre of a bioethical controversy this week. In October, doctors at Children’s Hospital and Regional Medical Center in Seattle published an article in which they described how they had used surgery and drugs to keep a nine-year-old from ever growing up. Instead becoming a 5-foot-6, 125 pound woman, Ashley X will stay 4-foot-5 and 75 pounds for ever. Doctors have also surgically removed her breast buds, her uterus and her appendix. At the time, her case went almost unnoticed in the media. But when her parents published a justifying what they had done, it was reported around the world.

There is no doubt that caring for Ashley is challenging. She has static encephalopathy, a severe brain impairment. She cannot walk, talk or swallow food. Her mental age is measured in months rather than years. Her parents, who have two other children, want to care for her as long as possible and fear that the larger she grows, the more difficult it will become for them. Furthermore, preventing her sexual development will prevent her from being abused in an institution, they say. As a smaller person, it will be easier to make her comfortable and to keep her from getting bored.

Her parents also borrowed an argument from the transhumanist George Dvorsky — that "she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development". People feel disconcerted by the sight of an adult with the mind of an infant, but Ashley will still be a doll when she is 60.

Reaction to the parents’ defence of "the Ashley treatment" was mixed, both by the public and bioethicists. Those in favour stressed the love of the parents for their "pillow angel". Those opposed saw the real problem as lack of social support. "Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families," declared Arthur Caplan, of the University of Pennsylvania.

Two paediatricians who commented on the case in the Journal raised other objections as well. Will administering high-dose estrogen give profoundly disabled children a better quality of life? There is no certainty about this. And given America’s past history of sterilising children with disabilities, could such treatment be misused in the future? They, too, call for "more funds for home- based services, not more medications".

One interesting feature of the case was its secrecy. This was a radical solution — the first of its kind in the world, according to Ashley’s parents — and all those involved knew that it would be highly controversial and could create a precedent for other parents. However, discussions were kept within the 40-member ethics committee at Seattle Children’s Hospital and consequently there were no legal challenges.