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  1. #1
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    Default Parents Stunt Growth Of Disabled 9 Year Old Daughter.

    I remember posting this a while back in the news section I think, and it got a really big split among people but kinda ended fast, lol. theres not many good debates right now.

    (AP) 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.

    Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.

    "This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."

    The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.

    Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.

    Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

    She goes to a school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.

    An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents says it has succeeded so far.

    She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.

    "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.

    University of Pennsylvania ethicist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," Caplan said.

    He called it another example of the "slippery slope issue, with other parents thinking the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood. It's not the right strategy."

    But Ashley's parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she will not experience the discomfort of having periods or growing breasts that might develop breast cancer, which runs in the family.

    "Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents' blog says. Still, they wrote, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
    link.

    so do you think this should be allowed? i really hate to say it but i think it should. it sounds so unhealthy and so awful for the child, but then again she wont be very happy when she's harder to take care of either.
    Last edited by RedStratocas; 25-12-2008 at 06:41 AM.

  2. #2
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    That's sad, if she does live old enough to live a proper life she'll be short and everything.
    That's why we seize the moment, try to freeze it and own it, squeeze it and hold it cause we consider these minutes golden.


  3. #3
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    That does sound a horrible thing to do but at the same time if it really does improve her life and makes it easier for her parents to care for her I think it should be aloud.
    I’ll be a story in your head, but that’s okay, because we’re all stories in the end. Just make it a good one, eh? Because it was, you know. It was the best. A daft old man who stole a magic box and ran away. Did I ever tell you that I stole it? Well, I borrowed it. I always meant to take it back. Oh, that box, Amy, you’ll dream about that box. It’ll never leave you. Big and little at the same time. Brand-new and ancient and the bluest blue ever. And the times we had, eh? Would had…Never had. In your dreams, they’ll still be there. The Doctor and Amy Pond and the days that never came.

  4. #4
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    Quote Originally Posted by JOSH View Post
    That's sad, if she does live old enough to live a proper life she'll be short and everything.
    She will never have a "proper" life, she is severely disabled. She won't even know what's happened. The parents did the best thing for her, and them.

  5. #5
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    If they can look after her better with her being that much smaller (which I'm sure they could - you try shepherding someone 5'6" who doesn't know their strength into doing anything) then it is for everyone's benefit. A good move I think, and she's not missing out on anything because she'd have never "grown up" mentally anyway.
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  6. #6
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    What happens when her parents die.. she cant care forherself because her growth has been stunted, she cant get a job..

  7. #7
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    Quote Originally Posted by Tim. View Post
    What happens when her parents die.. she cant care forherself because her growth has been stunted, she cant get a job..
    she wouldnt have been able to get a job anyway.....

  8. #8
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    Quote Originally Posted by Tim. View Post
    What happens when her parents die.. she cant care forherself because her growth has been stunted, she cant get a job..
    LOL! Can no one read nowadays? She is severely brain damaged... She would be taken into care if and when her parents died. THINK!

  9. #9
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    Quote Originally Posted by Tim. View Post
    What happens when her parents die.. she cant care forherself because her growth has been stunted, she cant get a job..

    she'll never have a job. shes mentally disabled, not only physically. her disability wont go away. it's a question of ethics, technically what the parents did is disable their child even more so that they can better take care of her.

  10. #10
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    If I have a daughter I'm clearly gonna get this done to her so I don't have to go through the heartbreak when she turns into a little ho aged 13
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