In the name of Allah; the entirely merciful; the especially merciful - بِسْمِ اللَّهِ الرَّحْمَـٰنِ الرَّحِيمِ

Thursday, 6 September 2007

Disabled girl is frozen in time

Bismillahir Rahmanir Rahim
Assalamu alaikum warahmatullahi wabarakatuhu

News.com.au

By Chris Ayres in Los Angeles

January 05, 2007 12:00am

Article from: The Australian

HER name is Ashley X, and she is a little girl who will never grow up.

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 it brought allegations of eugenics, of creating a 21st-century Frankenstein's monster, of maiming a child for the sake of convenience.

The reason for the controversy is this: three years ago, when Ashley began to display early signs of puberty, her parents told doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth.

In other words, Ashley was sterilised and frozen in time, for ever to remain a child. She was six.

Ashley, daughter of two professionals in the Seattle area, never had much hope of a normal life.

Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed or even swallow food. Her parents argued that keeping her small was the best way to improve the quality of her life, not to make life more convenient for them.

Because of her small size, the parents say, Ashley will receive more care from people who will be able to carry her: "Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings ... instead of lying down in her bed staring at TV all day long."

By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia - and the removal of her uterus means she will never have a menstrual cycle or risk developing uterine cancer.

Because Ashley was expected to have a large chest size, her parents say removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer. They also feared that large breasts could put Ashley at risk of sexual assault.

The case was approved by the hospital's ethics committee in 2004, which agreed that because Ashley could never reproduce voluntarily she was not being subjected to forced sterilisation, a form of racial cleansing promoted in the 1920s and known as eugenics. However, the case of Ashley X was not made public, and as a result no legal challenges were made.

Ashley's doctors, Daniel Gunther and Douglas Diekema, wrote in their paper for the October issue of the Archives of Pediatrics and Adolescent Medicine that the treatment would "remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so".

The paper inspired hundreds of internet postings: many supportive, some furious. "I find this offensive if not perverse," read one. "Truly a milestone in our convenience-minded society."

It was the critical comments that finally provoked Ashley's father to respond. While remaining anonymous, he posted a remarkable 9000-word blog entry at 11pm on New Year's Day, justifying his decision.

The posting includes links to photographs of Ashley, in which the faces of other family members, including her younger sister and brother, have been blanked out. "Some question how God might view this treatment," he wrote. "The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal ... to maximise her quality of life."

Ashley's father went on to describe how her height is now expected to remain at about 1.3m and her weight at 34kg.

The medical profession is divided. "I think most people, when they hear of this, would say this is just plain wrong," wrote Jeffrey Brosco, of the University of Miami. "It is a complicated story ... (But) high-dose oestrogen therapy to prevent out-of-home placement simply creates a new Sophie's Choice for parents to confront.

"If we as a society want to revise the nature of the harrowing predicament that these parents face, then more funds for home-based services, not more medication, is what is called for."

The Times

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