News & Politics - Treatment keeps girl child-sized

Lexis · 01-04-2007, 02:36 AM

I heard about this case on the news and dug up some more detailed information on it. Its so, so sad.

Quote:

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.

Her parents decided on a course of treatment for her which has involved hormone doses to limit her growth, as well as uterine and breast surgery.

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.

'Improve her life'

"A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver," Ashley's parents wrote on the site.

Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life
Ashley's parents

"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.

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

The surgery was performed in July 2004, and shortly after that Ashley began hormone treatment that is expected to reduce her untreated height by 20% and weight by 40%.

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.

Ethics row

They emphasised their love for their daughter and said that the amount of criticism their choice of treatment attracted had surprised them.

"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."

The BBC's Laura Trevelyan says the case has triggered an ethical row in the US about the limits of medical intervention.

When details of the case were published last year, it drew angry reactions from some people and the couple were accused of "Frankenstein-esque" behaviour.

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 told the BBC.

BBC NEWS | World | Americas | Treatment keeps girl child-sized

You can also read the parents blog at Blog.

I can understand why they made this choice but it is heart wrenching to think of this being done to a little girl.

**sunnykerr** · 01-04-2007, 07:11 AM

It's heart-wrenching to think of any little girl going through this. I have to say, though, inasmuch as her growing would lead to her parents being unable to remain as involved in her caretaking... this is a pretty huge commitment they're making.

I don't get the feeling that they're doing any of this out of any kind of desire to abuse or somehow impede their daughter in any way. Confronted with the fact that they will no longer be able to take care of her as they have as she grows older, and bigger, they took steps to insure that what must be a very heavy involvement on their part will continue for the foreseeable future. That, to me, is love.

It must have been heart-rending for them to come to such a decision. I can't imagine it.

nopal · 01-04-2007, 10:56 AM

I agree with Sunnykerr. I can't imagine being in their shoes and having to make this decision. But it is very likely that these procedures will make the girl's quality of life better in the long run, and they're doing the best they can in this situation.

elisheva · 01-04-2007, 11:52 AM

That's so sad, even if it the best way to care for the girl. It must be so incredibly difficult to be the parent of a severely disabled child - I think many of us would have major problems coping with something like that.

Love & Passion · 01-06-2007, 12:19 AM

yeah... this was on tv yesterday in Australia, and the parents said that it was a hard choice to make because they couldn't bear to see their daughter like that, but in the end it was their choice and you can't make them not do that because we don't know what it's like to be in their shoes.


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