Parents who froze girl in time defend their actions

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The Independent US

Opinion was divided yesterday about the case of Ashley X, the nine-year- old girl whom doctors have determined will never grow up. The severely disabled child has had her womb and breasts removed and hormone treatment to halt puberty and stunt her growth, freezing her development so that her parents can continue to lift and care for her at home.

Called "Pillow Angel" by her parents, the girl, who suffers from static encephalopathy, cannot walk, talk or hold her head up. She is fed through a tube and lies wherever she is put, usually on a pillow.

Her parents, from Seattle, who describe themselves as college-educated professionals, gave their reasons for seeking the treatment for their daughter in a 4,000-word blog launched on New Year's Day.

Only those in a similar situation were qualified to comment, they said. "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their care givers.

"Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximising her quality of life.

"A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver."

The parents also describe how their daughter is faring after the medical procedures in other blog entries. "Ashley is doing well ... [she is] healthy, happy, and lovingly cared for."

Medical experts said they could not say for certain whether the case was unprecedented, but that nothing similar had been reported in mainstream journals before.

"It's simply the first reported case any of us know about," Jeffrey Brosco, a University of Miami paediatrician and co-author of an editorial criticising the treatment, told the Los Angeles Times.

"I think most people, when they hear of this, would say this is just plain wrong. But it is a complicated story, and when you get into this issue, you can understand the difficulties."

Arthur Caplan, a medical ethicist at the University of Pennsylvania, said the "do no harm" rule governing physicians is powerful and stopping growth is, "not the ethical way to head".

In the UK, Richard Parnell, of Scope, an organisation which focuses on care for people with cerebral palsy, said many British parents of children with conditions similar to Ashley's would be "appalled" by her treatment.

"We hope any such request for this kind of treatment would go to a court because it is an abuse of the child's human rights and this is why everyone is so outraged," he said.

Professor Raanan Gillon, a leading ethicist at Imperial College London, said: "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."

Some parents of disabled children attacked what has been described as " Ashley's treatment" for creating a 21st century Frankenstein and for maiming a child for the sake of convenience.

But scores of supportive comments on the parents' website revealed how their decision had touched a nerve. "I worked with the severely disabled for 30 years and know the problem of a 190lb, 6ft tall man with the mind of an eight-month-old," reads one. "To bath, change and just move him was a nightmare.

"If they could be kept small then life for them would be easier and happier, they would be taken out more and kept home longer and live much more normal lives."

David Fleming, a physician who is director of the Centre for Health Ethics at the University of Missouri, said: "Only history will know and only time will be able to witness whether they [the parents] made the right decision. It seems likely they were acting in the best interest of the child. "

What is static encephalopathy?

Ashley has been diagnosed with static encephalopathy of unknown aetiology. She had a normal birth, but failed to develop, mentally and physically, for reasons doctors could not ascertain. "Over the years, neurologists, geneticists and other specialists conducted every known traditional and experimental test but still could not determine a cause," the parents say on their website. The diagnosis means that her brain has been damaged and the addition of the term "static" means that her condition will not improve. She will remain for the rest of her life with the mind of a baby.

The symptoms of static encephalopathy depend on which part of the brain is damaged. There is no cure and treatment is symptomatic, to ensure the child is kept comfortable and does not suffer.

Ashley's parents chose, in consultation with her doctors, a treatment known as growth attenuation. In 2004, doctors in Seattle, where the family lives, carried out a hysterectomy and surgery to remove her breast buds and started her on the hormone oestrogen to halt puberty.

The aim was to restrict her height to its present 4ft 5in - compared with the 5ft 6in expected without treatment - and to limit her weight to about five-and-a-half stones, instead of the nine stones expected. Her parents say this is not for their convenience but it will mean Ashley can be moved more easily, taken on trips and included in more family events "instead of lying down in bed staring at TV (or the ceiling) all day". The treatment was discussed in the US journal Archives of Paediatrics last October, provoking criticism from some doctors. The parents responded by launching their blog on 1 January.

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