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


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Originally uploaded by jippyjabber.

They call her the "Pillow Angel" They cut off her breasts and cut out her uterus to keep her that way!"
I am sick about this. It's insane.

MORE INFORMATION WITH NAMES OF THE DOCTORS INVOLVED
US doctors are helping to keep a severely disabled girl child-sized at her parent's request.
Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.




"The central purpose of the treatment is to improve Ashley's quality of life"
Ashley's parents


"It was in this little girl's best interests"
Ashley's doctors

"This is a technological solution to a social problem"
US medical ethicist Dr Jeffrey Brosco

"The real scandal is that developed countries like Britain and the US are failing to provide adequate support services"
Agnes Fletcher of the Disability Rights Commission




"There were some reasons in favour"
UK medical ethicist Professor Raanan Gillon


"There is no doubt that people who have got severe mental handicap find it difficult to cope with menstruation"
UK GP Dr Rosemary Leonard


"I find this offensive if perverse"
Anonymous opponents comments posted on internet chatrooms



Ashley's parents

"If people have concerns about Ashley's dignity, 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.

"Free of menstrual cramps, free of the weight of large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and to getting moved around"


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Ashley's doctors

Douglas Diekema from the University of Washington in Seattle was on the ethics committee that gave the go-ahead for Ashley's treatment.

"We said yes because the parents convinced us it was in fact in this little girl's best interests."

He and his colleague, Dr Daniel Gunther, wrote in the Archives of Paediatrics and Adolescent Medicine: "Caring for children with profound developmental disabilities can be difficult and demanding.

"All the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood."

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies: "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."


Dr Doug Diekema defends Ashley's treatment
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US medical ethicist Dr Jeffrey Brosco

Dr Jeffrey Brosco, Miami University: "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."


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Agnes Fletcher of the Disability Rights Commission

"This is unnecessary medical treatment, to deal with what is essentially a social problem: the poverty and lack of support faced by families with disabled children in both US and Britain.

"Ashley's parents say that they cannot afford paid carers to come to their home to support her and this is one of the reasons they give for the treatment, but no one should have medical treatment that is of no benefit to them without their consent. Such a basic principle has to be maintained.

"In Britain, half of families with disabled children live in poverty and eight in ten say they are at breaking point ¿ more likely to be in debt, less likely to be able to afford a holiday or visit friends or live at much beyond a subsistence existence.

"When parents face such trying circumstances, it is small wonder that they consider desperate measures.

"We have a care crisis in this country, with a lack of support for a decent and dignified family life that is placing unbearable strain on people and families.

"While this case is shocking, the real scandal is that developed countries like Britain and the US are failing to provide adequate support services, so that all their citizens can have a decent quality of life."