Debate rages in US over surgery that ensures disabled girl stays small

US: Ashley's parents call her their Pillow Angel, a name that is both a reference to the love and joy they feel for their daughter…

US:Ashley's parents call her their Pillow Angel, a name that is both a reference to the love and joy they feel for their daughter, now aged nine, and the severe disabilities she has suffered from birth. Ashley cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow."

Ashley, who is brain-damaged and has the awareness, her doctors say, of a baby, has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.

The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will forever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will in effect freeze-frame her body at its current size.

Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at its present 1.35m (4ft 5in), rather than the 1.68m (5ft 6in) she would probably otherwise have become. Her weight will stick at around 34kg (75lb) rather than 56kg (125lb).

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This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth. The explanation is accompanied by a gallery of photographs showing Ashley over the years. She was diagnosed, her parents explain, with brain damage just after birth and has remained at the same developmental level since about three months.

Three years ago she began to show early signs of puberty, and they grew anxious about the impact both of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's Hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.

The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried.

Outrage, however, has been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case.

Debate has raged among doctors and medical ethicists. Jeffrey Brosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. The ethical row is set to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment. Ashley has, they admit, been "infantilised" but they question the harm that would do a person whose mental capacity "will always be that of a young child". - (Guardian service)