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Severely disabled girl 'kept small'
news.com.au ^ | November 02, 2006

Posted on 11/01/2006 4:38:55 PM PST by Piefloater

IN a controversial treatment, doctors in the US have given a severely disabled child drugs to keep her small and 'manageable' for her parents.

In a report published in a medical journal this month, the doctors described a six-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home.

The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee.

In their report in the Archives of Pediatrics and Adolescent Medicine, doctors Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explained the reasoning behind what they hoped would generate healthy debate.

Dr Gunther is at the Division of Pediatric Endocrinology, and Dr Diekema is at the Centre for Pediatric Bioethics.

Caring for children with profound developmental disabilities could be difficult and demanding, they said.

For children with severe combined neurologic and cognitive impairment 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 increasing difficult, if not impossible, as the child increases in size.

(Excerpt) Read more at news.com.au ...


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KEYWORDS: moralabsolutes
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To: merry10
"what about if you were a deaf child and your parents got you a cochlear implant? That is medically altering the child for, it's true in a sense, the convenience of the parents and family."

Deafness is an impaired function. The medical arts are properly used to restore normal function; heal injury; cure disease.

In the case under discussion, medical techniques are bring used to impair normal functions, namely growth and maturation: not as a side-effect, but as the intended result. That is not ethical. It is the opposite of the purpose of medicine, which is to achieve health and healing.

In short, there's all the difference in the world between repairing abnormality, and deliberately pursuing abnormality.

41 posted on 11/01/2006 5:43:50 PM PST by Mrs. Don-o ("The law is written on their hearts, their consciences also bearing witness." Romans 2:15)
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To: Piefloater

Wow what an interesting moral dilemma, I'll have to ponder this a while before formulating an opinion. Looking forward to reading what others have to say.


42 posted on 11/01/2006 5:45:12 PM PST by Teflonic
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To: cammie
Do you honestly think that it's better to send the kid off to an institution once she becomes too big for her parents to handle?

That would be better than stunting her. But better still would be for the parents to sacrifice just a bit more, and care for at home even if she grows to adult-size.

-A8

43 posted on 11/01/2006 5:49:13 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: Mrs. Don-o

Then I hope you're against all cosmetic plastic surgery, Botox, teeth whitening, etc. etc. etc. all those things that medicine does to create things that are not found in nature -- abnormally white teeth, abnormally perky boobs, and abnormally unlined foreheads. Medicine does those things too.

We're talking about keeping someone SHORT for gosh's sakes, we're not talking about creating Frankenstein's monster. Tall or medically kept short -- what does it matter? Constant love and attention v. crapshoot - that matters in the grand scheme of things.


44 posted on 11/01/2006 5:51:17 PM PST by cammie
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To: cammie
Tall or medically kept short -- what does it matter? Constant love and attention v. crapshoot - that matters in the grand scheme of things.

Limbed or limbless -- what does it matter? Constant love and attention . . .

-A8

45 posted on 11/01/2006 5:53:17 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: adiaireton8

That's so uncaring to both the child and to the parents I really don't know what to say.


46 posted on 11/01/2006 5:54:48 PM PST by cammie
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To: adiaireton8

I already responded to that limb v. limbless issue -- it's the question of unnecessary ongoing pain and mobility problenms -- and I don't think it really benefits either one of us to continue this debate with each other.


47 posted on 11/01/2006 5:56:13 PM PST by cammie
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To: Asclepius

"Were I this child I would rather die, and die cruelly, than be medically altered for the convenience of my parents."

Relevant questions. What use does one have for a uterus if you are not going to reproduce? If normal size makes you less likely to receive quality care is it something you need? Is is more to the child's benefit to be bathed 3 times a week rather than once? Or to be moved to the bathroom to evacuate or be left for longer periods in a soiled diaper.

I see this also as being a quality of life issue for the child. Christ said that it was better to lose ones eye or hand and to enter the kingdom of heaven than to be whole. (paraphrase) It's not the same thing, but there are similarities.


48 posted on 11/01/2006 6:04:11 PM PST by Pete from Shawnee Mission (Rett Syndrome is a genetically induced autistic spectrum disorder....)
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To: adiaireton8

do you have any personal experience in the "sacrifices"
you are suggesting for these parents?

caring for an adult sized infant is a very physically and
emotionally draining experience.

these parents are not removing limbs, they are giving her
medications to keep her small so that she can be cared for
at home. they do not want to farm her out to an institution
when she is too big for them to care for her on their own.


49 posted on 11/01/2006 6:06:57 PM PST by leda (Life is always what you make it!)
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To: leda
do you have any personal experience in the "sacrifices" you are suggesting for these parents?

I have a seven-year old quadraplegic daughter that my wife and I take care of at home, and will continue to do so until we are too old or too incapicitated to do so.

What about you? Do you have any personal experience in these sacrifices?

-A8

50 posted on 11/01/2006 6:14:42 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: cammie

Overdosing her on estrogen may very likely give her breast cancer.


51 posted on 11/01/2006 6:16:22 PM PST by piasa (Attitude Adjustments Offered Here Free of Charge)
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To: adiaireton8
But better still would be for the parents to sacrifice just a bit more, and care for at home even if she grows to adult-size.

Really, we aren't discussing "want" here. Either elderly people (they will eventually be elderly) can carry around someone of 100-150 lbs regularly or they cannot. It isn't a question of sacrificing more.

52 posted on 11/01/2006 6:17:05 PM PST by Dianna
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To: adiaireton8

absolutely. as i said before, i am a special education
teacher. i have taught students of all disabilities from
preschool through high school.


53 posted on 11/01/2006 6:19:57 PM PST by leda (Life is always what you make it!)
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To: BlessedBeGod
How sickening. Maybe you can even think of some other ways to deform her to make things easier for the people around her. Why don't you get started right now?

Let's cut right to the chase here, shall we?

No abortion, right? And the parents can't make their own decisions about their child's care. Are YOU volunteering for the job?

54 posted on 11/01/2006 6:21:12 PM PST by Dianna
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To: cammie
That's so uncaring to both the child and to the parents I really don't know what to say.

A good end does not justify an unethical means. But "deliberately pursuing abnormality" (to use Mrs. Don-o's phrase) is unethical. (That is precisely why it would have been unethical to give thalidomide to this child in utero to prevent her from developing arms and legs.) Stunting a child is a deliberately pursuing abnormality. Therefore, stunting this child is unethical, even if done for a good end.

-A8

55 posted on 11/01/2006 6:22:28 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: adiaireton8
I have a seven-year old quadraplegic daughter that my wife and I take care of at home, and will continue to do so until we are too old or too incapicitated to do so.

This is a very tough situation. God bless you all. I hope you can keep her at home for a long, long time.

56 posted on 11/01/2006 6:23:47 PM PST by Dianna
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To: Dianna
Let's cut right to the chase here, shall we?

No infanticide, right?

-A8

57 posted on 11/01/2006 6:24:00 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: adiaireton8
But "deliberately pursuing abnormality" (to use Mrs. Don-o's phrase) is unethical.

Where the heck are you people when circumcision threads come up?

58 posted on 11/01/2006 6:24:58 PM PST by Dianna
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To: Dianna
Thanks.

-A8

59 posted on 11/01/2006 6:25:22 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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To: Dianna
Really, we aren't discussing "want" here. Either elderly people (they will eventually be elderly) can carry around someone of 100-150 lbs regularly or they cannot. It isn't a question of sacrificing more.

The girl is now six years old. Of course there will come a day when they can't move her. Nobody disagrees with *that*. The problem is doing something unethical (i.e. stunting the girl's growth) in order to extend the time before that happens.

-A8

60 posted on 11/01/2006 6:31:53 PM PST by adiaireton8 ("There is no greater evil one can suffer than to hate reasonable discourse." - Plato, Phaedo 89d)
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