Altering a disabled child so she will never grow up?

From Foxnews.com - Long but interesting - THOUGHTS?


Her name is Ashley X, and she is the little girl who will never grow up.

Until New Year’s Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children’s Hospital as they outlined a treatment so radical that it brought with it allegations of “eugenics”, of creating a 21st-century Frankenstein’s monster, of maiming a child for the sake of convenience.

The reason for the controversy is this: three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth.

In other words, Ashley was sterilized and frozen in time, for ever to remain a child. She was only 6-years-old.

Ashley, the daughter of two professionals in the Seattle area, never had much hope of a normal life.

Click here to visit the blog written by Ashley's parents, which includes pictures.

Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed, or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them.

By remaining a child, they say, Ashley will have a better chance of avoiding everything from bed sores to pneumonia — and the removal of her uterus means that she will never have a menstrual cycle or risk developing uterine cancer.

Because Ashley was expected to have a large chest size, her parents say that removing her breast buds, including the milk glands (while keeping the nipples intact), will save her further discomfort while avoiding fibrocystic growth and breast cancer.

They also feared that large breasts could put Ashley at risk of sexual assault.

The case was approved by the hospital’s ethics committee in 2004, which agreed that because Ashley could never reproduce voluntarily she was not being subjected to forced sterilization, a form of racial cleansing promoted in the 1920s and known as eugenics (it was satirized in F. Scott Fitzgerald’s novel The Great Gatsby). However, the case of Ashley X was not made public, and, as a result, no legal challenges were ever made.

Ashley’s doctors, Daniel Gunther and Douglas Diekema, wrote in their paper for the October issue of the Archives of Pediatrics and Adolescent Medicine that the treatment would “remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so."

The paper inspired hundreds of postings on the internet: many supportive, some disapproving but sympathetic, others furious. “I find this offensive if not perverse,” read one. “Truly a milestone in our convenience-minded society."

It was the critical comments that finally provoked Ashley’s father to respond.

While remaining anonymous, he posted a remarkable 9,000-word blog entry at 11 p.m. on New Year’s Day, justifying his decision.

The posting includes links to photographs of Ashley, in which the faces of other family members, including Ashley’s younger sister and brother, have been blanked out. “Some question how God might view this treatment,” he wrote. “The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximise her quality of life.”


Ashley’s father went on to describe how her height is now expected to remain at about 4ft 5in, and her weight at 75lb.


Without the treatment, she would have grown into a woman of average height and weight, probably about 5ft 6in and 125lb, with a normal lifespan.

The medical profession is divided. “I think most people, when they hear of this, would say this is just plain wrong,” wrote Jeffrey Brosco of the University of Miami, in an editorial. “But it is a complicated story . . . you can understand the difficulties. [But] high-dose oestrogen therapy to prevent out-of-home placement simply creates a new Sophie’s Choice for parents to confront.

“If we as a society want to revise the nature of the harrowing predicament that these parents face, then more funds for home-based services, not more medication, is what is called for.”

George Dvorsky, a director of the Institute for Ethics and Emerging Technologies, countered: “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.”

Re: Altering a disabled child so she will never grow up?

Im speechless.

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

Absolutely beyond frightening.....I'm actually not speechless but the words that come to mind, can't be posted. I'll leave it at this...I am completely disgusted that this could be allowed to happen...so wrong on so very many levels in my mind.

Re: Altering a disabled child so she will never grow up?

Scary

Re: Altering a disabled child so she will never grow up?

What is this world coming to.

Re: Altering a disabled child so she will never grow up?

I literally read that with my mouth wide open. I'm shocked.

Re: Altering a disabled child so she will never grow up?

i have no idea what to think..

ive never heard of such a thing

like others have posted, i am speechless as well

Re: Altering a disabled child so she will never grow up?

I feel like I can't judge those parents (not like me at all!) because I can't imagine how devastating it must have been to have a child with such a debilitating disability. It's a nightmare to me. I looked at the parents' blog- the situation, whatever your position on what they did, is heartbreaking.

Re: Altering a disabled child so she will never grow up?

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"Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed, or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them."



"They also feared that large breasts could put Ashley at risk of sexual assualt"
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OK....so if she can not walk, talk or get out of bed, she is at risk for sexual assualt how & when if her family is caring for her at home?

Mind boggling....but I do have to agree with someone whosaid you never what you would do in a circumstance if you had a child like this........but it seems so extreme

Re: Altering a disabled child so she will never grow up?

Having a disabled SIL and having worked with disabled adults and children for over 10 years, I am shocked.

I can't even get my thoughts straight enough to write how I feel...

Many disabled adults who are functioning at a 6 year old level, have very fulfilling lives. They work, have friends, go out to movies, dances, dinner...yes, they need supervision and daily care but that doesn't mean they can't experience things other adults do.

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

I am so speechless!!

Re: Altering a disabled child so she will never grow up?

Wow

Re: Altering a disabled child so she will never grow up?

I can't even believe what I'm reading.

Re: Altering a disabled child so she will never grow up?

My heart breaks for this little girl and her family. I can't even imagine having to make such a decision, but having worked in a nursing facility that cares for residents who are young but will never have any quality of life, I can understand the rational behind the procedures.

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

I dont understand how removing those things will stop her from growing, or stop her brain from developing?

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

Posted by ValR

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"Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed, or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them."



"They also feared that large breasts could put Ashley at risk of sexual assualt"
________________________________________________________________


OK....so if she can not walk, talk or get out of bed, she is at risk for sexual assualt how & when if her family is caring for her at home?

Mind boggling....but I do have to agree with someone whosaid you never what you would do in a circumstance if you had a child like this........but it seems so extreme

Re: Altering a disabled child so she will never grow up?

wow... I really don't know what to say.

on the one hand, I think her parents are probably doing what is best for her. on the other hand, it seems so wrong to play God like that.

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

Posted by ValR

______________________________________________________________
"Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed, or even swallow food. Her parents argued that “keeping her small” was the best way to improve the quality of her life, not to make life more convenient for them."



"They also feared that large breasts could put Ashley at risk of sexual assualt"
________________________________________________________________


OK....so if she can not walk, talk or get out of bed, she is at risk for sexual assualt how & when if her family is caring for her at home?

Mind boggling....but I do have to agree with someone whosaid you never what you would do in a circumstance if you had a child like this........but it seems so extreme

Re: Altering a disabled child so she will never grow up?

Re: Altering a disabled child so she will never grow up?

I would never even attempt to judge that poor girl's parents. I cannot imagine being in their shoes. But I don't really understand how the "treatment" improves her quality of life. To eliminate the risk of breast or uterine cancer? Was she predisposed to these cancers due to her condition? Doesn't sound like it.

I don't think they did it for their own convenience...I do believe their intentions were to do the best for their child but who knows what medical treatments, surgeries, or research may develop in the future that would help her quality of life far more... and she wouldn't have had to be stuck as child forever. I wonder if they considered that... I also wonder who suggested this treatment to her parents...or did they come up with the idea on their own...