Giving seriously disabled child treatment so she never grows up?
 

Treatment keeps girl child-sized

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.

Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed.

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.

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.

Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".

"If she were smaller it would be much easier for them to continue to provide a much more personal level of care," he said.

"Dad is frequently the one that lifts her from one place to the other, so if she gets bigger that becomes much more difficult, as they get older it becomes more difficult. At that point in time they would be forced to consider using a mechanical lift, which is much more impersonal."

'Improve her life'

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

"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.

In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.

Abuse fears

Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.

"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.

The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.

The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.

The couple emphasised their love for their daughter and said 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," they said.

"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."

http://news.bbc.co.uk/1/hi/world/americas/6229799.stm

That sucks man!!

None of you has a right to judge these people. Because most of you would never have a child like that. These people are sacrificing their lifes, I bet that they don't have any friends, or people don't come to visit them on Christmas. Thats not funny.

I am not judging but I do think it is something that deserves to be questioned.

May be it does, but not on a place like adult business board. More like a church.

well i can understand their view, but sometimes i truely believe that in some cases it would be more humane to put the "subject" to sleep..

hard words when you talk about a human but on the other hand you have to ask yourself what kind of life quality the poor girl has ..

give me a break...we can only talk about matters of life in a church? I think you will find there are many people here an in other non-church places that have a great deal of life experience that enriches such conversation rather than just being a divine issue.

I think its not our business and no one has the right to say shit except the parents that have to live this ordeal till their daughter passes away. She in all probability will not live to be a ripe old age. The parents made the best decision for THEIR daughter.

A lady who never grows old.



Well, I don't see any reasons why we should blame the parents for their decision.

Question fathers who beat the crap out of their children... These parents seem to be doing what's best for her.

:2 cents: :thumbsup

Imagine cleaning your full grown 18 year old daughters shit filled diapers every day, your 30 year old daughters, your 45 year old .....

I can't even imagine, those people are saints!

they are doing the right thing the sensible thing for themselves and the child. there is no rational argument to be made against it. hmm - well the only argument that i can think of is that i guess it is possible that there could be medical breakthroughs in the future and they'll have robbed her of any chance of a normal life - probably a 1 in 10 million chance of that.

imagine taking care of a 5'10" 200 pound grown woman with no brain almost. unless you're prepared to take care of that mess 24/7/365 year in year out you can't judge them.

definitely the right thing....
assuming that there's not a chance in hell that she'd ever partially recover...
it would be horrible to have a disabled child...