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 for surgery to block breast growth and have had her uterus, breast buds 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.
I read this story on the BBC News web site and couldn’t help shuddering. I wouldn’t want to be in the place of a parent having to make those decisions for their daughter. I don’t know whom I feel more sorry for, the girl or her parents.
But this raises ethical questions. Doesn’t it? Is this mutilation of a disabled person? As I understand it, Ashley was born with severe and permanent brain damage, called static encephalopathy. Perhaps I’m way out there to think of it as mutilation. What do you think? Is this a slippery slope? The ethics committee agreed with the treatment because her parents “convinced them it was in the girl’s best interests”.
And why on earth would the parents go public with what they’ve done? Why not keep it quiet, if even for the girl’s sake? Now they face even more publicity and criticism (which I assume they will counter with their blog). Now it’s in the public domain, it’s up for comment, and they seem surprised at the criticism.
You can read the full story here – and I would guess this story is going to be news for a while yet.
{ 4 comments… read them below or add one }
i figured you’d probably have a post on this.
i wouldn’t want to be making that choice. or having to deal with medical journals second guessing my every move.
it’s hard to say that someone who will never have more mental capacity than a 3 year old should be subjected to everything a full grown adult would.
actually, i support what the parents have done. i don’t believe the parents have anything but their child’s best interests in mind with their decision. if i have a child like pillow angel, i’d definitely consider it. if this is mutilation, what about sex change operations and cosmestic surgeries?
the parents probably went public because of the journal article about their daughter. they are educating (or miseducating, if you’re against the idea) the public about the disease and possible options for other disabled people.
its completely different a sex change operation, thats usually done by consenting adults. people who know the risks. that poor girl had no chance.
what if the child hadnt had that problem, and the parents still wanted to do it.. keep it as a baby.. would they have used for the childs best interest then.
essentially they have a real life living doll, for however many years it will live.
theres something very very creepy about this idea and it can create so many possible abusive situations.
i am a beleiver in darwinism, natural evolution, my ideas have been called sick and extreme, but they arre what i beleive in.. they are, if a severely disabled child is born and wouldnt survive without extreme medical measures, then let it die, its a question of should we prolong life, not can we.. this is what i feel, i am all for medical stuff, but severely disabled children who will rarely live long, or this poor girl..
just imagine at mental age of 3, going to hospital and getting mutilated like that.. never understanding why..
@ adam – I think that’s what disturbs me – that she’s being subjected to some things that even an adult might refuse. When is mutilation not mutilation? And she doesn’t have a say in what happens.
@mercurior – Very interesting points. I think the potential for more abuses on disabled people is high, and if they cannot say anything how do we know it really is in their best interests.
@ sulz – I have to admit it’s the “possible options” that disturb me the most.. . but I suppose we will see more of these types of stories in the future.