Marmiteboy - Urbane Warrior.

Thursday, November 02, 2006

The American Dr Mengele.

Lady Bracknell’s editor e-mailed me a very disturbing article that has appeared in the Science and Health pages of Reuters. It seems that two Doctors in Seattle, Washington State, in the good ole United States of America have given a 6-year-old disabled child treatment to stop her growth so that her parents can continue to care for her at home. According to the doctors the young girl has a ‘profound, irreversible developmental disability’ and has been given high doses of estrogen to permanently halt her growth. The treatment, which also included a hysterectomy, was requested by the child’s parents and initiated after (the report says) ‘careful consultation and review by an ethics committee’.

I cannot see any justification for this brutal treatment of a child. Now the parents may be finding it hard to cope with a disabled child, I have no argument with that, and they may wish to keep their child like she is (however misguided that may seem). My argument is with the medical ‘profession’ for agreeing to do this.

The two doctors in question are Dr Daniel F Gunther and Dr Douglas S. Diekema who work at the University of Washington. In their report they note that ‘caring for children with profound developmental disabilities can be difficult and demanding’ they go on ‘For children with severe combined neurological and cognitive impairment (at least they’ve got the terminology right – Ed) who are unable to move without assistance, all the necessities of life – dressing, bathing, transporting – must be provided by caregivers, usually parents, and these tasks become increasingly difficult, if not impossible, as he child increases in size’. (Maybe this is the medical term for growing up!!! – Ed).

This dangerous nonsense continues. “Achieving permanent growth attenuation while a child is still young and of manageable size 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 the child at home might be able to do so”.

Apparently “despite having the neurological development no greater than an infant, the 6-year-old responds to her parents and two healthy siblings –vocalizing and smiling in response to care and affection – and clearly is an integral, and much loved, member of the family” the doctors said in their report. Shame she hasn't been treated like one then isn't it?

The child is a year into this treatment and is reaching the end of her growth. The doctors have said, “as yet, there have been no treatment complications”. Well that’s all right then!! I wonder if they have considered the prospect of osteoporosis because of such an early hysterectomy

I cannot begin to express how appalled I am over this ‘treatment’. How dare someone experiment on a child? I suppose they think it is okay to do it on a disabled child as she won’t have the capacity to raise a concern, or so they say. How do the doctors know that the restriction on this child’s growth won’t have an adverse effect on her cognitive growth?

After the Second World War the Nuremberg trials sentenced doctors to death for carrying out experiments like this. In the land of the free it seems that, as long as the parents say it is okay, they can fuck up a young life by stopping them growing. Authors of a commentary on the treatment have called it ‘ill advised’ but have welcomed the debate that helps to “advance our ethical dialogue as we struggle to define our core values in words, laws and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities”.

So it seems that it is okay to continue to experiment on disabled children because it raises a debate. There is only one thing to say about this. It is totally unacceptable and wrong to treat a child (disabled or not) like a laboratory rat. The Reuters report doesn’t once mention the welfare of the child. It concentrates on the parents only. Although caring for a disabled child with severe impairments must be a task we must always take into account their welfare before anybody else’s wishes. For once I hope the religious right in the US kick off about this and use all their influence with Bush to end this appalling state of affairs. If they don’t what will the next step be. Compulsory euthanasia for disabled children whose parents can’t cope?

11 Comments:

Blogger Lady Bracknell said...

Link to the original article, should Marmite's excerpts from it not already have chilled your blood sufficiently.

The Editor

7:35 pm

 
Blogger Charlesdawson said...

The is pure Frankenstein, isn't it? "Manageable." Like a debeaked chicken or a dehorned calf - less trouble to look after?

God knows what kind of a future these parents foresaw for their daughter is this was their only solution.

12:02 pm

 
Blogger Agent Fang said...

This is appalling! Actions like this are surely not part of "advancing our ethical dialogue"?!!! There is nothing even remotely ethical about doing this to another human being. And to make the parent's life easier? Perhaps if the parents had lobotomies...

3:36 pm

 
Blogger marmiteboy said...

Fang,

I think the parents might have already had a lobotomy. The doctors too by the sound of things. It really is appalling isn't it. By far the worst abuse of medical powers I have ever come across.

4:27 pm

 
Blogger stella said...

Isn't it interesting that they can go about performing late-term abortions on the basis of the child having a short stature condition (as happened here in Melbourne to a woman at THIRTY TWO WEEKS), because they believe being short statured to be a horrible affliction. Yet they can justify ACTIVELY causing children to be short statured, as long as they have an intellectual disability?

I don't understand. The only word I can think of is 'fucked'.

11:43 pm

 
Blogger Pillow Angel said...

The heroine of this discussion is our daughter Ashley. If you are interested in the full story about the "Ashley Treatment" see: http://ashleytreatment.spaces.live.com/blog/ and for Ashley's photos see: http://ashleytreatment.spaces.live.com/photos/

8:06 am

 
Blogger Miss Norway said...

This is cruel. I'd like to remind the doctors, responsible for this, that we are not barbariansnor are we dr Frankenstein. I actually got scared, when I heard about what they're doing to this little girl. I cannot see how anyone could live with themselves, letting a little girl go through all of this pain.

11:12 pm

 
Blogger jessielynne said...

Marmiteboy,

It disturbs me that you, author of the blog, “The American Dr. Mengele,” which concerns the ethicality of Ashley’s treatment, do not use much of your own voice when presenting the issue and why you oppose the treatment. Because of this, it is vaguely clear why you are against Ashley’s treatment, since you do not properly use your sources as a means to “express how appalled I am over this ‘treatment’,” as you stated in this blog.
Ashley’s treatment may neither be ethical nor unethical. However, by looking at the results in the long run, this treatment will be beneficial to both the parents and the child. In an article written by the parents of Ashley titled, “The ‘Ashley Treatment’,” the parents explain the conditions of her neurological disability. “Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk,” the parents write. By giving Ashley high-dosages of estrogen, doctors will be able to stunt her growth, enabling the parents to care for Ashley her entire lifetime without the worry of Ashley growing so much that they would not be able to roll her over, change her position in bed, and sit her up. How ethical would it be to just leave Ashley on the bed in one position because she had grown to full size and no caregiver was able to move her around? Marmiteboy, in your blog, you state that it is a “shame she hasn't been treated like [“an integral, and much loved, member of the family”] then isn't it?” Ashley’s parents’ article, “The ‘Ashley Treatment’,” also emphasizes that “Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.” How is this not treating her like a normal and much loved child?
Although we may have different views and opinions on the issue, I understand that not everyone is going to feel the same way about such a controversial topic as with the case of Ashley and her treatment. So, by no means am I trying to shoot down your side. I am simply pointing out that you should consider using some of your own opinions and reasons why the doctor’s decisions are appalling and wrong, to better argue your view on the issue.

2:31 am

 
Blogger nsultan said...

I have been to the site you are talking about and I have to agree with your opinion on the matter. The parents are not taking into account the issue of osteoporosis. Their child cannot even communicate with them how she feels, can they imagine what it would be like if she broke a bone while they were doing as simple a task as giving her a bath. Also, my major qualms are with the doctors as well and how they justify/explain the procedure; they say that removing her breast buds early on will inhibit her from "inviting" any sexual abuse from her caregivers. How can she possibly invite anything let alone sexual abuse when she has the development a three-month old?!

2:59 pm

 
Blogger KLH8704 said...

Marmite Boy,
I was very unclear as to why you felt that Ashley's treatment was so "brutal" other than the early hysterectomy may cause osteoperosis later on, and then you ask a question about "the restriction on this child's growth... having an adverse effect on her cognitive growth?" I can't say whether I agree or disagree with your opinion; my desire was just that you would have done some research about the treatment and backed up your opinions with facts. You also seem to be without any compassion at all for the parents; I cannot imagine what it would be like to have a child solely dependent on me with an additional two. Your article seemed incredibly opinionated and one-sided, just like Ashley's parents website. All they did was address reasons it would be benefit Ashley, not possibly hurt her. All you could talk about was this "brutal treatment." Once again, I would like to see both sides addressed with aqequate facts so a person can properly make up his/her mind on this controversial issue.

7:50 pm

 
Blogger mb2010 said...

Marmite boy,

I have visited the site you mention and also read many other articles relating to Ashley and her condition. At first I sided with the parents, because I did not know the other half of the story. After reading the other articles, I realized how brutal, unethical, and just plain horrifying the matter really was. I do strongly agree with your opinion. When visiting “The Ashley Treatment” site for a second time I realized, how much information the parents were leaving out. I believe they did this to justify their actions and let their readers believe there were no other options. They again fail to mention the possible side affects that the treatment could cause in the future, and even worse don’t mention that there ARE other possible treatments to help improve the life of their daughter. Talking care of any sick person is hard work, but in Ashley’s case I feel the parents allowed their daughter to undergo the treatment to ease their lives.

1:29 am

 

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