Surgery to stunt girl's growth

Started by Lise, Jan 12 07 10:03

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Lise

How terrible is this? To deny their daughter the chance to grow into womanhood just so they can look after her without the discomfort of going through the whole process? She's brain damaged but that doesn't mean she doesn't have any right at all.

  I don't get people these days. *sigh*

   [DIV class=topPhoto][img height=120 alt="Ashley is seen bundled up in Dec. 2006." src="vny!://images.ctv.ca/archives/CTVNews/img2/20070104/160_ashley_070104.jpg" width=160 border=0]   [FONT size=1]Ashley is seen bundled up in Dec. 2006.[/FONT]

[/DIV][FONT size=6]Activists condemn surgery to stunt girl's growth [/FONT]

 [P class=timeStamp]Updated Fri. Jan. 12 2007 8:40 AM ET

 [P class=storyAttributes]Associated Press

 [!-- dateline --]CHICAGO[!-- /dateline --] -- Activists are demanding an investigation into treatment performed on a severely brain-damaged girl whose growth was deliberately stunted to make it easier for her parents to care for her at home. [!-- CPPara1End--] [!-- CPPara2--]Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl's rights. [!-- CPPara2End--]

 [!-- CPPara3--]"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy. [!-- CPPara3End--]

 Taylor said that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.

 Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.

 The case has prompted an outcry nationwide and abroad since the bedridden girl's parents disclosed details of the treatment on a blog last week.

 The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4-foot-5, about a foot shorter than the adult height she probably would have reached, her parents say.

 Ashley suffered brain damage from an undetermined cause that was diagnosed shortly after birth, leaving her in an infant state. She cannot sit up, walk or speak. Her parents say keeping their little "pillow angel" small will allow them to continue caring for her at home even when she is an adult.

 Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.

 The girl's doctors at Children's Hospital and Regional Medical Center in Seattle described the case in October's Archives of Pediatrics & Adolescent Medicine.

 Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interest.

 The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical spetgwpdts, including neurologists, development spetgwpdts and ethicists," Molteni said.

 The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.

 Feminist and disabled-rights groups are also demanding an AMA ethics committee look into the case.

 "This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the suburban Chicago-based disabled rights group Not Dead Yet.

 [A href="vny!://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070112/activists_ashley_070112/20070112?hub=Health"][FONT size=1]vny!://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070112/activists_ashley_070112/20070112?hub=Health[/FONT][/A]

 
Always end the name of your child with a vowel, so that when you yell the name will carry.
Bill Cosby.

onthefence

I understand the "no periods" thing (the ovaries were left), but the breasts and growth should have been left alone.  It's a sad commentary on society when parents feel they have no options but to do things like that to their children with disabilities.

purelife

It's tough to say when I have never been a mom to a child with disability.  *knock on wood*  I know one person who was a mom to a child with disability.  It was extremely tough for her to let her child go to a care home and to see her child with the disabililty.  It changed her life forever.  This is such a touchy issue.

  If you found out during the beginning stages of pregnancy that the baby has a "problem," would you abort it?  

  Tough answer for parents, isn't it?

Gopher

First time I read this I decided that the parents were in the wrong, then I thought about it and changed my mind. The only thing I'm certain is that I am not in the same position - I don't think that any decision could have been made without a lot of heart-searching beforehand.
A fool's paradise is better than none.

purelife

I know Gopher.  Who are we to say that those parents are either wrong or right until you have been in their shoes in a similiar situation?  It must've been heartbreaking for those parents to decide on stunting her growth.  For us who have not been in their shoes, would probably think that it's the worst thing to do to a human being.  

  In China, girls would purposely wear these wooden-block shoes so that their feet stay at one size for the rest of their life.  Is this wrong?  

Lise

Regardless, there's something immoral to do that a human being for crying out loud. Just for the sake of a few inconvience, they're going to stunt her growth and stop her menstruation. Who gave them the right to do it? Had I been in their shoes, I would never do that to my children. Yes, I may pay the price later on but I'm going to respect their bodies and do whatever I can to make their lives more comfortable. Whatever the price, I'm willing to pay.
Always end the name of your child with a vowel, so that when you yell the name will carry.
Bill Cosby.

Gopher

Yep, it's a disturbing subject all round. I find it very hard to make any judgement on it and just hope that the decision that's made turns out to have been the right one for the future of the child.  
A fool's paradise is better than none.

Lise

Always end the name of your child with a vowel, so that when you yell the name will carry.
Bill Cosby.

Russ

I dont think stunting growth and removing mammaries is the right thing to do. The menstral doohickeys I can understand in my mind.

  That being said, I am not in the same position as those parents who have to care for their child for the rest of their lives. And as such, I cant and should not have any say in how they care for their child.
Mercy to the Guilty is Torture to the Victims

purelife

The child just has to trust the parent's decisions.  How does one define "human being?"  One that is breathing?  If that's the case, there's euphanasia.  I know parents have chosen to cut the cord to their kids who have been supported by machines.  Is this wrong?  I know, this is a whole other issue but relatively along the same lines.

  These parents decided that it was best to stunt her growth.  Who am I to say that that was wrong.  How do we know that that wouldn't be the best thing for her?  It could be possibly be a better life for her than to have her go through years of agony and pain.  It already hurts parents to see their child having the cold/flu.  Can you imagine the pain they would be feeling at the bottom of the bottom stomachs when their child is in agony and in extreme pain forever?  

  It's tough.

Russ

purelife wrote:
 The child just has to trust the parent's decisions.  How does one define "human being?"  One that is breathing?  If that's the case, there's euphanasia.  I know parents have chosen to cut the cord to their kids who have been supported by machines.  Is this wrong?  I know, this is a whole other issue but relatively along the same lines.



These parents decided that it was best to stunt her growth.  Who am I to say that that was wrong.  How do we know that that wouldn't be the best thing for her?  It could be possibly be a better life for her than to have her go through years of agony and pain.  It already hurts parents to see their child having the cold/flu.  Can you imagine the pain they would be feeling at the bottom of the bottom stomachs when their child is in agony and in extreme pain forever?  



It's tough.[/DIV]
 'bless', Better put than what I was trying to mangle out.

  They did it in the best interests of their daughter, and they have to live with it.. dont you think they had a long hard think about it, and talked with their doctors?

  If she was so equiped, and the unthinkable happened and she had a child, how would it be cared for? She is bedridden remember as well as challenged.

  It is a touchy subject. And everyones got an opinion... Im curious.
Mercy to the Guilty is Torture to the Victims

purelife

Bless right back at ya Russ.

Ally

I actually agree with this situation and the parents.  I am very familiar with this case and the 40 person ethic committee that was involved in the decision.    
"Not everything that counts can be counted, and not everything that can be counted counts." (Sign hanging in Einstein's office at Princeton)

onthefence

[FONT color=#007f40]Did anyone catch Larry King tonight.  If not, [A href="vny!://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html"]here's the transcripts[/A] from the show.  Nancy Grace [A href="vny!://transcripts.cnn.com/TRANSCRIPTS/0701/04/ng.01.html"]also talked about this[/A] and she really put the bioethist in his place.  Btw, Nancy is doing another show about the Ashley Treatment tomorrow at 8 p.m. ET on Headline Prime.[/FONT]

[FONT color=#007f40][/FONT]

[FONT color=#007f40]I thought the panel was very insightful and passionate, both for and against.  It is clear society and policies have made things the way they are there is no infrastructure in place to help parents in these difficult situations regarding their children with disabilities so in Ashley's case, to keep her 9-years old physically for the rest of her life meant her parents can take care of her as long as they are able. [/FONT]

[FONT color=#007f40][/FONT]

[FONT color=#007f40]Even so, her parents are not immortal.  I have yet to hear a definite answer what they have planned for when they are no longer able to look after Ashley either because of their death or physical inability, but I get the feeling they expect the siblings to take over.[/FONT]

onthefence

[FONT color=#007f40]The embedded links don't seem to work.  Here they are again:[/FONT]

[FONT color=#007f40][/FONT]

[A href="vny!://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html"][FONT color=#007f40]vny!://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html[/FONT][/A]

  [A href="vny!://transcripts.cnn.com/TRANSCRIPTS/0701/04/ng.01.html"][FONT color=#007f40]vny!://transcripts.cnn.com/TRANSCRIPTS/0701/04/ng.01.html[/FONT][/A]

[A href="vny!://transcripts.cnn.com/TRANSCRIPTS/0701/04/ng.01.html"][/A]