Treatment keeps girl child-sized

LDDA - The Liberal Democrat Disability Association <info@disabilitylibdems.org.uk>

Treatment keeps girl child-sized

January 6, 2007 9:44 AM

Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life. The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.

Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed. They say the treatment will help to improve her quality of life.

Ashley's parents, Seattle residents who have not given their names, went public over their daughter's treatment in a blog launched on 1 January. Their decision came after information about Ashley's case was published in a US medical journal last year, triggering considerable debate and criticism.

Ashley's parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities - movement that will benefit her physical and mental well-being. Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".

"If she were smaller it would be much easier for them to continue to provide a much more personal level of care," he said.

But Agnes Fletcher of the UK's Disability Rights Commission said is was "unnecessary medical treatment to deal with what is essentially a social problem", referring to "the poverty and lack of support" faced by families with disabled children.

Ashley's parents wrote in their blog: "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver. Rather, the central purpose of the treatment is to improve Ashley's quality of life."

Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her "Pillow Angel", because she does not move from wherever they put her, usually on a pillow. The couple decided three years ago to take steps to minimise their daughter's adult height and weight.

In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.

Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.

"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.

The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said. The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said. The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies said: "If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."