What would you do if your infant daughter's mental age would always be measured in months rather than years? That she would never walk, talk or swallow food? That she might never recognise you? Pray that you never have to face it. But the parents of Ashley X, an American girl now nine years old, did face it. They came up with an unprecedented solution.
Ashley has "static encephalopathy of unknown aetiology", a severe and permanent brain impairment. She will need intensive care for the rest of her life, which doctors say could be 60 years or more. When her parents consulted experts at Children's Hospital and Regional Medical Center in Seattle they discovered that it was possible to radically retard her growth with high doses of the female hormone estrogen. Instead becoming a 5-foot-6, 125 pound woman, Ashley X would stay 4-foot-5 and 75 pounds for ever.
They went further. To make her more comfortable and to prevent her from being sexually molested, doctors surgically removed her breast buds and her uterus. While they were at it, they removed her appendix. Mr and Mrs X call this the "Ashley Treatment" and earlier this month they described it in detail on a website which has attracted attention from the media around the world.
Mr and Mrs X are loving parents. They call their daughter their "pillow angel" -- because she stays wherever they leave her. Instead of feeling sorry for themselves, they insist that their oldest daughter "brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her." She responds to light, music, and voices. In fact, her parents, who have two other children, want to care for her as long as possible. But they fear that the larger she grows, the more difficult it will become for them.
Mr and Mrs X are loving parents. But have they made the right decision by stunting their daughter's growth, lopping off her breasts and neutering her, especially since none of these are of direct medical benefit?
There was no lack of commentary in the media. A number of bioethicists supported what they did. The Ashley Treatment would make life easier for her carers and might reduce the possibility of complications such as bedsores.
But others contended that reshaping Ashley's body for the convenience of her carers was wrong. "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. And two paediatricians, Jeffrey Brosco and Chris Feudtner, who commented on the case in the medical journal Archives of Pediatric and Adolescent Medicine felt the same: "If we as a society want to fundamentally revise the nature of the harrowing predicament that these parents face, then, in the end, more funds for home-based services, not more medication, is what is called for."
Disability activists have taken a very dim view of what happened to Ashley. "We rely on healthcare professionals to alleviate pain and suffering and maintain functionality, not decide when someone is worthy of holding human rights," commented the Disability Rights Education and Defense Fund, in California.
Society is barely interested in such children. California plans to spend US$6 billion on embryonic stem cell research, a snake oil venture which will mainly benefit ageing baby boomers -- but care for disabled children and adults is "woefully impoverished", in the words of Brosco and Feudtner.
Brosco and Feudtner also pose the simple, but overlooked question of whether the Ashley Treatment will actually work. There is no data to support the notion that mentally impaired young adults who are shorter and light are happier than taller and heavier ones. And, in any case, while the estrogen may make her shorter, it may not reduce her weight. The Ashley Treatment is a step into the unknown.
These objections were barely canvassed by the media in its coverage of the "pillow angel". Why?
Probably because the solution, radical as it was, struck a chord with Americans. As the incredible popularity of cosmetic surgery shows, they regard the body as a kind of appliance to be reshaped at will. Worried about ageing? Get a Botox treatment. Hate your weight? Try liposuction. Boys don't like you? Ask for breast augmentation. "You deserve to look as beautiful on the outside as you are on the inside" is the slogan of cosmetic surgery clinics. It's the first rung on the ladder of transhumanism, the wacky dream of transforming ordinary humans into X-Men.
It's significant that Ashley's parents quoted comments on their daughter by the transhumanist writer George Dvorsky: "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 wizened doll at 60.
The philosophy which underlies The Ashley Treatment is that this little girl's body is just a tool of the spirit to be reshaped and redesigned at will. The real her is trapped inside a floppy, burdensome carcass. Her parents have remodelled her body to match her mind. But this is wrong. Inseparable from our minds, our bodies are also us, not an attachment to us. We are not less dignified if our minds are impaired; we are not less dignified if our bodies are impaired.
The Ashley Treatment is being touted as a precedent. In its wake, despite protests from disability groups, desperate parents will start asking doctors to turn these unfortunate children into sexless dwarves at even younger ages. And the doctors and hospitals will agree -- because it is cheaper and more convenient.
It's bad enough when Michael Jackson and Elizabeth Taylor reshape their bodies to match their fantasies. But at least it is their choice. Ashley has no choice. Her body has been remoulded to match her parent's dream of a child who is forever young and innocent -- and conveniently small. Their intentions are clearly good but high-dose estrogen treatment to stunt the growth of disabled chidden is an experiment which should happen only once. Michael Cook is Editor of MercatorNet.