This is a story about a disabled nine-year-old girl, Ashley X, who will never grow up.
Ashley X, who had severe brain damages, is now sterilized and frozen in time, with the help of hormones, by which she could remain child-sized forever.
Until New Year's Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children's Hospital as they outlined a treatment so radical that it brought with it allegations of 'eugenics', of creating a 21st-century Frankenstein's monster, of maiming a child for the sake of convenience.
The Seattle-born girl is described as 'Pillow Angel' by her parents as she stays where they place her (usually on a pillow). She suffers from a rare brain condition known as static encephalopathy, which means she cannot sit or talk and is fed by tube.
Three years ago, her parents observed early signs of puberty and became concerned that she would become too large to lift or move. After consulting with the doctors, Ashley was given a hysterectomy, a surgery that prevents breast growth and high doses of oestrogen were given, that have frozen her body at its current height (4 foot 5 inches).
The treatment, known as growth attenuation, is expected to keep her weight at about 5 stones till her lifetime.
It is believed to be the first time that the growth of a profoundly disabled person has been deliberately inhibited, and the ethics surrounding the treatment for disabled children had never been discussed in mainstream medicine until Ashley's treatment was revealed in the journal Archives of Paediatrics and Adolescent Medicine in October.
In discussions with doctors at Seattle Children's hospital about the treatment, they said that they had removed Ashley's uterus to prevent fertility, excision of early buds on her chest had been done so that she would not develop breasts and medication with high doses of oestrogen were given to limit her growth by prematurely fusing the growth plates of her bones.
But as the news about the treatment spread, Ashley's parents were surprised by the virulence of some of the response. But the girl's parents insisted 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 bedsores and lie more comfortably and as a result we will continue to delight in holding her in our arms. Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long.
The treatment, which took place at Seattle Children's Hospital, had been described as 'ill-advised' by Jeffrey Brosco, a paediatrician at the University of Miami, in a co-written editorial, though he applauded doctors for publishing the case and helping to 'advance our ethical dialogue' on the topic.
Brosco added: 'This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly.'
However, the ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee. The doctors accept that Ashley's hysterectomy was contentious, given the dark history of sterilization of disabled people in Europe and America, and that there were risks involved in the operations and oestrogen doses.