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Last Updated: Thursday, 4 January 2007, 09:57 GMT
'Frozen girl' debate
Image of Ashley X
Ashley began showing signs of puberty aged six
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.


Ashley's parents

Ashley's doctors

US medical ethicist Dr Jeffrey Brosco

Agnes Fletcher of the Disability Rights Commission

UK medical ethicist Professor Raanan Gillon

UK GP Dr Rosemary Leonard

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"

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."

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."

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."

UK medical ethicist Professor Raanan Gillon

Professor Raanan Gillon, Imperial College London, UK: "My immediate response was shock, horror and disgust. How could a child be mutilated in this way?

"But on reflecting, it seemed to me there were some reasons in favour. She could be looked after much better by her parents...in a much more appropriate way as a child because she will remain an infant [mentally] for the rest of her life anyway."

UK GP Dr Rosemary Leonard

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

"There have been cases in the past in this country where children with severe mental handicap have had their uterus removed to prevent them accidentally becoming pregnant...and to mean they don't have to go through the trials of menstruation."

Anonymous opponents comments posted on internet chatrooms

"I find this offensive if perverse."

"Truly a milestone in our convenience-minded society."




VIDEO AND AUDIO NEWS
Ashley, the child at the centre of the controversy



SEE ALSO
Treatment keeps girl child-sized
04 Jan 07 |  Americas

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