The Ashley "treatment"
I admit to being way shocked by this article in today's Guardian.
Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow".
I am worried without even knowing the circumstances; this report makes the parents seem like they see their daughter as a doll. I don't know what it's like to care for Ashley, but there's something spooky here. The Guardian goes straight to the point:
The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.
Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.
Why would anyone want to do this to someone? The answer is as follows:
This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth. It is the first time they have given a public account of their actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug.
She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
The parents insist that the treatment, carried out in 2004, was conceived for Ashley's benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. "As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long," they write.
- Is there any medical evidence for this claim about sores?
- Does anyone know where their website is?
- Did I miss blogosphere discussion of this?
- Is this really for Ashley's benefit? It sounds like a convenience for the parents, parents who get to keep their own little "doll" girl.
- Is this really treatment?
- What might Ashley think?
- How is this ethical?
- Why does it matter that her parents are college-educated? Self-justification? Educated people can be just as prejudiced as non.
Here's a link to the news articles I can find:
http://news.google.com/news?hl=en&lr=&ct=title&ie=UTF-8&ncl=1112400227&filter=0
I am shocked.
5 comments:
You have raised some important points - there is certainly much still that needs to be considered. I have searched, but can't find the web site either...
The web site for Ashley's treatment is:
http://ashleytreatment.spaces.live.com/PersonalSpace.aspx?_c02_owner=1
She's their pillow doll who is good because she stays where they put her. How horrifyingly dehumanizing.
The little girl in the pictures is bright-eyed and animated. It's clear to me that Ashley has some level of interest and enjoyment in the world around her. She could function at a higher mental level as she grows up than she does now-- maybe even know how her body was mutilated so she can stay tiny and be her parents' pillow doll who is good and stays where they put her.
Not to mention possibly develop cancer, blood clots or have a stroke due to all the hormones which are likely at far stronger doses than my little hormone replacements.
I feel sick.
There are other answers to this issue. My son is severely disabled and has the same abilities as Ashley although the cause was different. I hope this is the first and last case we ever hear about; I can't imagine such a barbaric treatment would be considered humane. As for Ashley, I am sure she knows what's going on and that it's not right. My son likes the same things she does and they aren't as slow as we think.
It's a shame that so many people failed Ashley.
You people have this all wrong. I have an older brother, who has static encephalopathy, and I wish there had been something like this for him, and for my folks, 40 years ago. Both my parents died far too young, and they looked 30 years older than they should have, because of the constant care, they had to provide. They bascially raised an infant, one who grew to 5'11" and 180lbs, for 35 years. Now, my parents are gone, long before their time, and my brother lives in an institution. I applaud Ashley's parents for wanting to do something to assure the highest quality of life for their entire family. I've followed this story closely, and this is one of the few places I've seen a negative response. Ignorance is so unbecoming.
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