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   Surgery to stunt girl's growth raises questions

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Topic: Surgery to stunt girl's growth raises questions (Read 448 times)

Rhune
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Surgery to stunt girl's growth raises questions
« on: Jan 4^th, 2007, 8:18pm »

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Surgery to stunt disabled girl's growth raises ethical questions
POSTED: 8:25 p.m. EST, January 4, 2007

CHICAGO, Illinois (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 uterus and breast tissue of the bedridden 9-year-old girl were removed at a Seattle hospital, and she 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.

The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.

University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."

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 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 say 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.

Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow 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 say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."

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

Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.

Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.

"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."'

Copyright 2007 The Associated Press.

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Bumper
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Re: Surgery to stunt girl's growth raises question
« Reply #1 on: Jan 4^th, 2007, 10:18pm »

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It looks like we have reached a point where modern science has found the key to Pandora's Box.

. . . . . . the possibilities and more so, the ramifications of the opening of that box . . .

. . . scare the crap out of me.

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Rhune
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Re: Surgery to stunt girl's growth raises question
« Reply #2 on: Jan 5^th, 2007, 1:33pm »

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I don't doubt they believed they were doing the best thing for their daughter...I'm shocked a doctor went along with it, but I also don't care for what they did. I'm in touch with your pandora's box comment.

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Re: Surgery to stunt girl's growth raises question
« Reply #3 on: Jan 5^th, 2007, 2:19pm »

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So you feel that this child, who has no chance of recovery, would be better off if the parents let her get to the point where they couldn't give her the activity and attention she gets now?

Ask any caregiver who is caring for a severly handicapped person if they wouldn't be able to do more with them if they were more easy to transport and maneuver...see what they say.

These parents are struggling enough with the 'loss' of their child, but for anybody to second guess what they feel is the best way to care for their daughter, WITH DOCTORS' GUIDANCE, completely blows my mind.

Let's concentrate on second guessing the parents who let their children take guns to school to shoot friends and teachers, or parents who send their children out to get them drugs first and leave these people who obviously love their daughter and want whats best for her alone.

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Re: Surgery to stunt girl's growth raises question
« Reply #4 on: Jan 6^th, 2007, 12:30am »

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on Jan 5^th, 2007, 2:19pm, MediaScribe wrote:

Well Scribe, this is exactly what I was referring to when I made my original comment.

Well meaning individuals, carve out one example, one individual situation, that tugs at the heart strings and seems to make the most sense in the world . . for the betterment and welfare of the individual affected . . . and in doing so, we justify using modern science to play God. This child we are speaking of won't die any quicker or live any longer in the absence of the medical procedure . . . . what we talking about here is doing something medically so that things will be easier/better for the parents/caregivers. It's something the parents want.

The opening of Pandora's Box is that ethical line in the sand that we cross. Where do we stop? Where does it end? We are already hearing of people requesting "designer babies" , and just last week there was an article in the paper regarding Dwarfs and deaf parents wanting to manipulate the birth of their babies so that the child would have the same traits as the parents. THEY say they want children that look like them.

Sure, that situation that started this thread sounds reasonable . . . . that's the BEGINNING of the road. What scares me is the OTHER end of the road! Where would playing God end? What would the new line be that we wouldn't cross? As a parent who lost a young child, I can understand the feelings and the love those parents have for their child. There's not a day that goes by that I don't wish that things would have turned out differently for my child. As a Christian, I had to accept that God has a plan, and yes, I prayed to my God to help modern medical science save my child. But what we're talking about here is the reality of having Doctors BE God,
.....and that is a prospect that I have some grave concerns about.

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