Discussion in 'Science & Society' started by S.A.M., Jan 4, 2007.
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When it's that extreme I don't have a problem with it, if it is limited to singular cases like this. What worries me is how universally some people might think this solution would be applicable. Growing up causes problems. Solution: Stop the child from growing up.
Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her "Pillow Angel", because she does not move from wherever they put her, usually on a pillow. ...
"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."
Sounds like she could be the perfect woman... a real pillow angel.
Disabled girl kept child-sized for benefit of parents.
A severely disabled girl is undergoing surgery and hormone treatment to retard her growth, in order that her parents, who are her caretakers, won't have to deal with an adult-sized body.
I'm in favour of all sorts of "man plays God" scenarios, genetic engineering, GM foods, limited animal experimentation. This goes beyond the pale, for me. Regardless of her having a mental age of 3 months, it's appalling to consider doing this, at least partly because she isn't capable of giving or withholding her consent.
What kind of world are we living in!?>!?! Justifying a hysterectomy and radical mastectomy by reference to "potential sexual abuse"??
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I'm not in favor of
This is just atrocious and disturbing to me on so many levels.
should they put her in a home then?
Tell you what. Let's cut her legs off instead.
She doesn't use her appendix either - that should be removed, because it just may rupture one day.
Her arms... Pointless. Off with them.
She only needs one lung and one kidney - they just make her heavier anyway, and more difficult to lug the "Pillow Angel" around. Get rid of them too.
Compassion for her suffering, my ass.
It is all about convenience for the parents - they should at least be honest about it.
If they feel they can't care for her, then YES, she should be put into a care facility.
Hell, I'd sooner support euthenasia than their actions.
They do not know what she thinks or feels, they just believe they do.
I ask this:
If this girl is being radically altered surgically to remain a child (which surely will impact her health?) why is she even kept alive?
Not that I advocate killing her, mind you, but I see no reason to do such things as OPPOSED to killing her, specifically as this is certainly a harmful procedure.
It's not even so much that they claim to think the surgeries and hormones (of which we can't be sure of the effects physically, mentally and emotionally) are the preferrable option for her over the "impersonal" aspect of having to use a mechanical lift when she gets heavier...
Thier bullshit justification is bad enough, but the problem for me is more that the doctors approved this abomination of medical ethics.
Their whole justification boils down to simply;
"She's going to get heavier, we're going to get older and mechanical lifts are not very tender and personal. We want to be able to hold her in our arms."
And the doctors agreed.
Why not? You advocate killing almost everyone else.
They did acknowledge it was one of the primary reasons for the girls treatment:
I don't know. My mind screams in horror when reading this story. As a parent, I can't imagine anything worse than to even have to face such a decision. Can I say they are wrong? In all honesty, I cannot because if it were my child, I don't know what I would do.
They submitted the girl to the treatment because keeping her small will ensure they can keep looking after her and they won't have to put her in a home.
I felt like weeping when I read this. Imagine the pain and distress these parents had to go through to come up with the decision to submit their own daughter to such operations? I don't think I can. I know I don't want to.
It's easy for us to condemn them, but place ourselves in their shoes, what would we do? Place her in a home to be cared for by strangers? The girl has a mind of a 3 year old and would be highly distressed and face futher mental damage at being away from her parents. Hire help? The parents have admitted they had to resort to this because they could not afford hired help to come in on a daily basis to help care for her:
So how else could they care for her? They don't want to and may not be able to put her in a good home, they can't hire help and it seems there is no free help supplied by the government. So what else could they have done?
Think about it. In all the horror this story brings to mind, think about what other options these people had? Pretty much none and that is another sad reality of this story.
I do not believe in killing innocent people.
No, they pass it off as strictly for her well-being - not their convenience. In fact, they said...
Have you known anyone who has had to care for such a child?
She's about 40 years old now.
It was certainly never easy for them, nor was it impossible.
They don't have much money, by the way.
These are not the only two options.
3 MONTH old (supposedly) not 3 YEAR old.
The parents don't seem to have much, if any, worry about distress and mental damage.
It's not easy, but it's not impossible.
Many people do it.
They SHOULD have more help.
The governement SHOULD provide better options for care (though there are a lot more options available than most people realize).
But, in my opinion, THIS is simply not an acceptable action to take, no matter what the circumstances.
It is extraordinarily difficult raising a severly retarded child with a tendency to act out in violent urges... Should the parents be allowed to have their limbs removed? Even if they are not ambulatory?
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The story's comments pages are much more supportive of the parents, actually I was stumped to find a negative comment. I am still very surprised how easily the ethics committee involved were convinced by the parents. As doctors they're supposed to be scientists, as scientists they're supposed to be skeptical thinkers, as skeptical thinkers they're supposed to come up with thoughts like "If she were not mentally disabled would you even consider putting the question to her to find out her opinion?", or "you want her lighter, cut her arms and legs off." I sincerely do feel that people are really not reading and understanding properly the implications of using a low-probability event like sexual abuse (who the hell would be abusing her?) in order to justify, well, castrating her during her prepubescence.
Quite a few reasons were given.
I have said before I felt horrified when I first read this. I just kept thinking 'how in the hell could they do this to their child?'. But then I slowed down my anger at the whole concept and thought about both sides of the argument. And frankly I can understand their point of view as well.
These people did not have to come forward with their story. But they did anyway and have been facing abuse for their decision. Every single article I have read on this story have all said the same thing. Even those against them ethically and morally have said that they can understand why they did it, but no one should undergo unnecessary medical treatments. In this child's case, they felt it was necessary.
I can tell you now, as a parent, I don't know what I would do in their situation. As against it as you might be, try to look at it from their point of view as well. Instead of judging them, try to understand why they felt the need to submit their daughter to this treatment. I would agree that there are benefits to keeping her small in stature, such as she can be moved without too much fuss or need to use hoists and harnesses, she can be taken out and she will be less at risk of facing bed sores, bladder infections, she's more mobile as she can be moved around in a more comfortable reclined stroller, she can be held by her parents (as someone with the mental age of a 3 month old, she will still expect and want that close contact).
Moral outrage is one thing, but look at it from their point of view. She is not in pain. Her smaller size means she can be taken out and see more things and moved around a lot more, to prevent her boredom. She can be picked up when upset or distressed. Think of how you would comfort or treat a 3 month old and apply it to this girl. Bathing and changing her can be made easier with her smaller size.
Yes it is possible to care for her as she becomes an adult and is adult in size. But her parents did not want to have to face having her confined to a bed for the most part without much contact with the outside world. They have stated in their site that she becomes distressed in a wheelchair so have been using a twins stroller to accomodate her size. If she gets much bigger, she would no longer fit in a stroller and would have to be placed in a chair she hates being in because she does not like to sit up. Moving her around if she were adult size would be difficult and at times near impossible.
I'm not saying they have done the right thing or that all parents with severely disabled children should consider this form of treatment. What I am saying is that before judging them, try to imagine what they are going through and try to imagine why they felt this treatment was necessary for them.
A very good friend of my parents have a child who is severely disabled and retarded and is prone to violence and self injury. They have removed all his teeth as he had taken to biting himself and had destroyed most of his tongue, they have removed his finger nails and toe nails surgically removed as even if they are short and he is restrained, he could still gouge himself and sometimes others when he had to be rolled over or bathed, etc. Plus they keep him medicated and restrained at all times so he does not hurt himself or his parents and carers. Even though he is rolled over often, he still suffers from really bad bedsores, has had several bouts of pneumonia as his weight and the fact he is constantly lying down appears to have put pressure on his chest and body, suffers from constant battles with kidney and bladder infections, and the home he had been placed in closed and their only option was to place him in an old people's home (and they are terribly underfunded and understaffed so he would not be able to get the care he needs) as in Australia, care for the young in his position is virtually non-existent. So he went back home and his parent's lives are literally a nightmare in caring for him.
Parents Have Surgery on Child to Stunt Her Growth
This is stirring a national debate so it should be posted on Sciforum.
Surgery to Stunt Girl’s Growth Sparks Debate:
"Parents say drastic treatment allows them to take better care of their child. In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little “pillow angel” a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6. Some ethicists question the parents’ claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home. http://www.msnbc.msn.com/id/16473471
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