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]
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.
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?
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.
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?
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.
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.
True. Very true.
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.
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.
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.
Bless right back at ya Russ.
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.
[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]
[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]
I have a friend with 2 severely handicapped children (mind you, they're adults in age now) and I've never been more in awe of 2 people, who tried EVERYTHING for those children. Fortunately they have more money than God, and have been able to travel the world whenever any possible glimmer of hope was presented. They have a team of nannies and physio people etc who live-in. I marvel at how they've coped. However, I can't imagine the same dilemma with a couple without the financial resourses that they have, coping with the same level or kind of committment.
As far as this situation goes, it doesn't really give much info. Are the parents older ?....are they looking ahead and covering the dilemma of not being physically ABLE to lift her and care for her ? Would the possiblity then be that she would have to be institutionalized ? I wouldn't want to be put in that position of having to make such a choice.......but I don't think from this article, that there is enough info to condemn them for their decision. I need to believe it was done out of love, more than convenience.
Ahhhh...onthefence.....It's on Larry King NOW. (I wouldn't watch Nancy Grace if there wasn't another single source of news left.) There is a couple on that is being pretty judgemental about what this couple has chosen to do. They seem to be overlooking the fact that they're comparing apples to oranges. They stated that they respected the right of their handicapped child by changing their sons environment to suit their son as opposed to changing their son to suit the environment. They talked of the schools they chose..........etc. Wait.....They lost me right there. Ashley is mentally and emotionally an infant forever.....school will not be an issue. These people need to compare apples to apples if they feel they need to be so outspoken about someone elses choices.
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.
Those activists are not looking at Ashleys needs as an individual. All they want to do is make some noise about some things they know (or think they know). They're not the slightest bit concerned whether these things even apply to Ashley. Can you imagine an infant suffering menstrual cramps every month? I sure can't.
[A href="vny!://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070112/activists_ashley_070112/20070112?hub=Health"][FONT size=1][/FONT][/A]
P.C. wrote:
Ahhhh...onthefence.....It's on Larry King NOW. (I wouldn't watch Nancy Grace if there wasn't another single source of news left.) There is a couple on that is being pretty judgemental about what this couple has chosen to do. They seem to be overlooking the fact that they're comparing apples to oranges. They stated that they respected the right of their handicapped child by changing their sons environment to suit their son as opposed to changing their son to suit the environment. They talked of the schools they chose..........etc. Wait.....They lost me right there. Ashley is mentally and emotionally an infant forever.....school will not be an issue. These people need to compare apples to apples if they feel they need to be so outspoken about someone elses choices.
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.
Those activists are not looking at Ashleys needs as an individual. All they want to do is make some noise about some things they know (or think they know). They're not the slightest bit concerned whether these things even apply to Ashley. Can you imagine an infant suffering menstrual cramps every month? I sure can't.
Ahhh, PC. 'bless'. Thats whats needed more of.. people looking at something and not giving it a blanket statement. A 'gut' ruling is whats needed nowadays in individual circumstances. Unfortunately, thats not the way things go now. Rulings are made for everyone, not for what is required.
[A href="vny!://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070112/activists_ashley_070112/20070112?hub=Health"][FONT size=1][/FONT][/A]
[FONT color=#007f40]I understood the parents wanting to avoid the mess and "inconvenience" of handling Ashley's monthly periods and to prevent accidental pregnancy should she be sexually molested. That is something that has been done for decades on the mentally retarded, so that is not a new thing.[/FONT]
[FONT color=#007f40][/FONT]
[FONT color=#007f40]Based on family history the parents and doctors said Ashley would have grown to be 5'5 or 5'6 and be too big and heavy for them to move around. I would have thought there would be lifts and things available to help lift her off and around. The show "Extreme Home Makeover" has shown all sorts of stuff like that to help paraplegics be moved around in the house. Weight can be managed through the feedings. Family history of breast cancer and large breasts, plus the placement of straps to strap Ashley in her wheelchair were the reasons given to remove the breast buds to avoid breast growth. One reason for removing the breast buds was to "desexualize" Ashley to lessen the chances she would be molested by a caregiver. I don't think Ashley's lack of breasts will stop a pervert from doing what they want.[/FONT]
[FONT color=#007f40][/FONT]
[FONT color=#007f40]The parents are "college-educated professionals" in Seattle, but they have said they cannot afford "quality caregivers" to come to their home and look after Ashley. It made me wonder if they are working and if they do who looks after Ashley then, and what the state of Washington has available to help parents of children with disabilities.[/FONT]
[FONT color=#007f40][/FONT]
[FONT color=#007f40]Another thing is this happened three years ago. I'm wondering why the need to bring it out now. Someone said it was because researchers had published the Ashley Treatment and all of a sudden people were questioning how this could happen. It's a tough situation, and after all has been said and done, Ashley's parents made what they felt was the right decision for themselves at that time even though they claim it was all for Ashley.[/FONT]
Those links do not work. I don't know why.
I haven't seen that Larry King segment on the Ashley Treatment (I, too would not touch Nancy Grace if she was the last person on earth - that woman does not deserve her program) but I'm not convinced that this is the right course of action for the parents. It's still wrong to do something to your child's body simply for the sake of making your lives a bit more comfortable. I still don't think it's right to surgically alter your child's body in any event.
Having said thus, it is a difficult area for the parents. What's done is done. Perhaps in light of the situation, they should be given the right for privacy. The last thing they need is other people to judge them.
ARGH!
Anyways, hope this link works.
Transcript.
[A href="vny!://www.hanaduschak.com/2007/HEALTH/01/11/ashley.ethicist/index.html"]vny!://www.hanaduschak.com/2007/HEALTH/01/11/ashley.ethicist/index.html[/A]
[FONT color=#007f40][/FONT][/DIV][FONT color=#007f40][/FONT]
[FONT color=#000000]That's the point, onthefence........those reasons are the reasons that the 'activists' and nay sayers are using. The doctor, who was involved with Ashley and her parents said that the mess and inconvenience was only a small part of bringing them to their decision. [/FONT]
As far as breast developement.....again.....the reasons that are coming out loudest stem from the 'activists'. From the doctors and parents ?.....breasts would make it painful for Ashley when straps and harnesses are needed to prevent harm, plus as you mentioned, the likelyhood of hereditary breast cancer.
I'm sure there is all kinds of apparatus to hoist Ashley around. I'm also sure it would be extremely costly and would also restrict her more to home. I understand they try to maintain as much normalcy as possible when it comes to family outings etc. The couple that I was speaking of earlier, has spent millions (MILLIONS) on the care of their children. There is a whole floor of their house set up with specialized equipment and specialized care people to go with it.....and none of it comes cheap. Believe me....there has never been a time in my life so far, that I could have afforded those things.
As far a surgically 'altering' a child, I think it SOUNDS far worse than it is. How different is it from removing a growth that may impair a childs ability to walk. Could they get along fine without it being removed? Probably, but who wouldn't make that decision if it brought their child a life free of pain or discomfort.
I hadn't even realized this case was from 3 years ago.....good question, why the big kafuffle now? All I know for certain, is I am thankful everyday that I was blessed with 3 healthy children..... I have no idea what conclusions I would have come to had they faced a future of uncertainty. I DO know that if there was anything I could do to ward off any pain or discomfort that they would surely have faced, the decision would definitely get easier. If those things by chance made MY life more convenient, I would consider that a mere bonus.
The worst news any parent can get is when the doctor says something is wrong with your child. That happened to my family with my sister. But the doctors were wrong thankfully. (they said she would never be able to talk or hear she didn't start speaking until 3ish, she's got LD problems but she's got will power like no other).
My cousins aunt has downs syndrome. She's 45 but still has an outlook of an 8 year old. I understand why the parents did this and if you look at it from there perspective this makes a lot of sense. This is a special case but if I was put in the same situation I'd do the same thing because I don't want to think about what could happen if she got older. Something could happen to her and other bad things can happen.
Well said, PC, well said indeed.
[FONT color=#007f40]Yeah, that's why I'm on the fence about this. On the one hand I understand the concerns how people with disabilities continue to be seen as an "inconvenience" one way or another, and on the other hand I understand the family's desire to keep her at home and be able to look after her. The way extended care homes are, and with all the repots of abuse and mercy killings it is no wonder it is best to have Ashley at home as long as possible.[/FONT]
[FONT color=#007f40][/FONT]
[FONT color=#007f40]I just don't want to see this kind of medical intervention become the standard for all children with such disabilities, especially as medicine has been proven wrong time and time again with irreversible diagnoses of disabilities.[/FONT]