Severely disabled girl has surgery to stunt growth, prevent puberty

[Nikijad4210]

I really don't know how to react to this one way or the other, period.....What do you think??

http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html

Disability community decries 'Ashley's treatment'
POSTED: 4:48 p.m. EST, January 11, 2007
By Elizabeth Cohen

(CNN) -- David is a young man with severe cerebral palsy. He can't walk, he can't, talk, he can't sit up by himself, but he can blog.. This week, David blogged about Ashley.

"Ashley's parents have committed the ultimate betrayal," he writes. "They have treated their daughter as less than human, not worthy of dignity ...What strikes me about 'the Ashley treatment' and has brought me to tears is that the very people in all of society whom this child should trust, have betrayed her."

Everyone on the Internet, it seems, has an opinion about what Ashley's parents did to her. Ashley, who's 9, has a condition called static encephalopathy, which means an unchanging brain injury of unknown origin. She's in a permanent infantlike state -- can't hold her head up, speak or roll over on her own. (Watch a bioethicist discuss Ashley's case. )

When Ashley, who was six years old, her parents had her uterus and breast buds removed so she'll never reach puberty. Then they gave her estrogen treatments so she'll never be more than 4 feet 5 inches and 75 pounds. Like the Terri Schaivo story before her, Ashley and her story have a lot to say about what it means to be disabled, what it means to be different, and what it means to be human.

Feminist groups and disability activists protested Thursday in front of the American Medical Association headquarters in Chicago, demanding that the AMA officially condemn Ashley's doctors for performing the procedure.

Ashley's parents speak publicly only through their blog. On it, they explain why they did what they did: that Ashley will be more comfortable at a smaller size; that large breasts would have made lying down difficult; that it will be easier to include her in family gatherings if she is lighter and easier to carry around.

Some of the most vociferous critics of what Ashley's parents call "the Ashley treatment" have been other parents of disabled children.

"My son is eleven....doesn't walk, doesn't talk, etc., etc." writes one mom ....He's hard to carry. He's not going to get easier to carry....And still, I don't understand. I don't understand removing healthy tissue and functioning organs...Growing is not a sin or a disease -- it's what kids' bodies do, even disabled bodies."

"Don't get me wrong -- caring for a 5' something, 110+ pound, adult with physical disabilities is no walk in the park," blogs another mom. "I've got the trashed lumbar discs to prove that. But I am truly just sick to my stomach to imagine that it's acceptable medical practice in any case to surgically stunt a child's growth....Using their logic, why not just perform quadruple amputations? I mean, really, she's not going to use her arms and legs."

Many others have been supportive of Ashley's doctors and parents. On CNN.com, for example, one person wrote, "No one objects to surgery to remove a cancer or hormone treatments to treat a variety of ailments. No one objects to pain medication for palliative care. Why would anyone object to surgery or hormones to improve the quality of life and care for a severely mentally disabled child?"

In the end, as in the Schiavo case, it comes down to who speaks for Ashley, a girl who cannot speak for herself. A CNN.com reader who's supportive of Ashley's parents wrote: "Nobody is stopping to think how a little girls with mentality of an infant would treat bodily processes such as puberty and menstruation -- a process that scares even the most normal of our children."

But others think they're in a position to understand what Ashley wants. "Ashley is human. I am human.," writes David on his blog. "Ashley is me. I am Ashley. And you are Ashley, too."

 

[tngreen]

damn crazy shit right there.

 

[gnosis]

I've read a little bit about it, and I think its necessary to state (because it is not done in this strange article) that the girl is forever set with a 3 months old intellect, that she began showing puberty at !!6!! and that without an uterus she only thing she'll miss is being raped by a specialized institution's caretaker.... which she probably won't need as her parent may manage to keep her with them a long time, which would'nt have been possible with a physically full blown woman, at 12 years old, with a 3 month old mind. The most fucked up thing is that she was born, now this is kind of damage control, for the family, and ultimately, for herself (like not having to lie in a bed for a whole life), or at least the body of what would have been herself.

 

[TrichomusCaesar]

This kind of stuff is why I believe in testing fetus' to make sure they aren't disabled in any way before birth....and if they have a serious condition....then abortion. There's no need to put someone through life-long misery in today's day in age.

 

[Guest]

fucked up shit!

 

[smokeymacpot]

its maybe not such a bad thing that they did that. the kid has no quality of life anyway, so why make it worse by letting her go through puberty and reaching an adult size.

although she should really be put to sleep, but there are laws saying that isnt allowed to happen. i know if i was in the same state as that girl or that david i wouldnt want to carry on living.

 

[Guest]

This kind of stuff is why I believe in testing fetus' to make sure they aren't disabled in any way before birth....and if they have a serious condition....then abortion. There's no need to put someone through life-long misery in today's day in age.

 

[Yummybud]

I don't see the big deal really, Why would it be in her interest to go through puberty and get bigger? it would have no benefit for her and her smaller size might help her quality of life.

I swear some people just want to protest just to show that they can protest.

 

[Pops]

It would have probably been simpler to have removed the ovaries and regulated the hormonal levels to achieve the same thing. I have a half-sister who was born mentally and physically handicapped. She is now in her 50's,but has the emotions of a 4-5 yo and the mental capacity of an 8 year old. My parents chose to get her a hysterectomy when she was about 12, as she was in some workshops with other children, some of whom were boys a little oplder. By doing this, they ensured that even if she were to be raped or talked into something she did not understand, she would not get pregnant.

 

[JJScorpio]

I think the parents thought this over, and this isn't something we should look down on them for. I am not sure why it needs to be posted here. We arent in their shoes.

Anyways, one thing I can think of is how would it be when she starts her period with the mind of a 3 month old? I don't think I need to get into any descriptions of that mess. Its a sad thing and I salute the parents for being there for her and caring the best they can.....

 

[pieceofmyheart]

I cannot imagine this wasn't an extremely painful decision for her parents. But quality of life? Her quality of life depends on her parents ability to care for her. To move her and lift her, bathe and diaper her, to keep her as comfortable as possible. I believe that in order for them to do this, it would best to be physically able to do it.

Also, to be a caregiver to a woman with a infant intellect who has monthly periods would add a huge burdon to the parents and certainly wouldn't make her any more comfortable.

 

[killa-bud]

they had to do what they had to do

 

[Guest]

i can understand their reasoning, im thinking i don't agree with what they did. in any case, its pretty fucked up what we've come to as a society