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Thursday, January 04, 2007

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

Originally uploaded by jippyjabber.

They call her the "Pillow Angel" They cut off her breasts and cut out her uterus to keep her that way!"
I am sick about this. It's insane.

US doctors are helping to keep a severely disabled girl child-sized at her parent's request.
Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

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

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.

"The central purpose of the treatment is to improve Ashley's quality of life"
Ashley's parents

"It was in this little girl's best interests"
Ashley's doctors

"This is a technological solution to a social problem"
US medical ethicist Dr Jeffrey Brosco

"The real scandal is that developed countries like Britain and the US are failing to provide adequate support services"
Agnes Fletcher of the Disability Rights Commission

"There were some reasons in favour"
UK medical ethicist Professor Raanan Gillon

"There is no doubt that people who have got severe mental handicap find it difficult to cope with menstruation"
UK GP Dr Rosemary Leonard

"I find this offensive if perverse"
Anonymous opponents comments posted on internet chatrooms

Ashley's parents

"If people have concerns about Ashley's dignity, she will retain more dignity in a body that is healthier, more of a comfort to her, and more suited to her state of development.

"Free of menstrual cramps, free of the weight of large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and to getting moved around"

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Ashley's doctors

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 and his colleague, Dr Daniel Gunther, wrote in the Archives of Paediatrics and Adolescent Medicine: "Caring for children with profound developmental disabilities can be difficult and demanding.

"All the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood."

George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies: "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."

Dr Doug Diekema defends Ashley's treatment
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US medical ethicist Dr Jeffrey Brosco

Dr Jeffrey Brosco, Miami University: "This is a technological solution to a social problem.

"I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly."

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Agnes Fletcher of the Disability Rights Commission

"This is unnecessary medical treatment, to deal with what is essentially a social problem: the poverty and lack of support faced by families with disabled children in both US and Britain.

"Ashley's parents say that they cannot afford paid carers to come to their home to support her and this is one of the reasons they give for the treatment, but no one should have medical treatment that is of no benefit to them without their consent. Such a basic principle has to be maintained.

"In Britain, half of families with disabled children live in poverty and eight in ten say they are at breaking point ¿ more likely to be in debt, less likely to be able to afford a holiday or visit friends or live at much beyond a subsistence existence.

"When parents face such trying circumstances, it is small wonder that they consider desperate measures.

"We have a care crisis in this country, with a lack of support for a decent and dignified family life that is placing unbearable strain on people and families.

"While this case is shocking, the real scandal is that developed countries like Britain and the US are failing to provide adequate support services, so that all their citizens can have a decent quality of life."


Amy W said...

Good God. Removing her uterus? What? You have got to be kidding me? And that was allowed??

Jippy said...

I can't believe this happened. I know I worry about puberty with my son but I would never think of taking steps to prevent it. The reasons they give scare me.
I think the doctors should be prevented from doing this again. There was no medical reason for this at all. I mean cut off her breasts so she can lay down?
As far as abuse she is at the same risk being kept as a child. I can't really comprehend this!

Miriam said...

My husband told me about this and I had to come by and see for myself. I have so much to say about this- if my comment is too long, feel free to delete it.

Quote from the article: **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.**

Um, this man is the spokesman for an ethics board? And is positing an argument tantamount to saying that children (or anyone else under the age of fully realized self-awareness) are not worth defending against indignity?

She appears incapable of most physical pleasures so why feed, clothe, entertain, care for her at all? So because she is incapable of mortal fear, then what? If the requirement for human dignity has been changed to include only those with a specific capacity, then we have all lost ours.

Miriam said...

I agree that the doctors should not have allowed this. I don't know what the parents were thinking, but unless she was likely to ge insanely breasty, why are breasts an inhibitor to laying down? I can imagine the fear of an institutionalized child experiencing molestation is incredible, but does removing those bits prevent it? No. (Shudder.) Shame on those docs- and especially because the article also said "the amount of criticism their choice of treatment attracted had surprised [the parents]..." That means some doc published this case without preparing these people for the reaction, which means one thing to me: They didn't fully understand the implications of what they were doing.

I have a friend whose family had to FIGHT with docs to allow a heart surgery on his Downs boy. This surgery improved the boy's life appreciably, immediately. What is the MATTER with these ethics boards?!? Keep in mind he was not waithing for some rare donated organ- it was just a mechanical reparative surgery. Sad.

cinemagypsy said...

Oh God, this is horrible. Surgeries are painful. Hormones can be so dangerous, especially for the bedridden. This is sickening.
Removing her reproductive organs to prevent molestation? Aren't her parents watching her around the clock?

Jippy said...

Miriam, I am so greatful for your posts. I am still in shock over this. Somebody needs to think this through rationally! I really would like this doctor thrown off the ethics board. Given a psych eval! I am glad your friends faught for their son's heart surgery. Those are my people, fellow moms and dads who go fight for their special needs children.

When Zach was first in his wheel chair, I had to carry him up and down a flight of stairs to get home or go any where. I thought about moving not stunting his growth with hormones! RRRRRRRRRR!

Jippy said...

I knew there were more medical reason why this isn't good! Thanks for posting them.

Isn't she at a higher risk for cancer taking hormones?

You know this article is reported from the BBC and I really want this is the American Media.

Michele_3 said...

I just read about this story- It made me very sick to my stomach..
Very heartbreaking for the child- It seems it was more done for the convience of the parents in my opinion-So Sad!

Bethany said...

I am sickened by this. Whoever said parenting would be easy? To mutilate a child to make your life easier?! Come on. The ethics committee doctor needs a dictionary. What's next? My kid talks to much, I want to cut her vocal cords? It will make my life easier.

Sorry for the histrionics, but I'm disgusted and can't think clearly.

Jippy said...

It is sad and I know you have a special needs child and we need these docs to be real advocates out there!

No apologies needed! I swear I was in shock too!

The awful thing is that AOL has a poll out today and last I checked it was getting many votes of approval!
AOL Poll

That Chick Over There said...

Holy crap., holy CRAP.

cinemagypsy said...

I don't know if the child is at a higher risk of getting cancer from the hormones. There always seems to be a risk of something with any medicine and if she doesn't need it, they shouldn't be giving it to her.