Surgery to stunt girl's growth

P.C. · Jan 12 07 09:02

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.

P.C. · Jan 12 07 09:52

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.

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Russ · Jan 13 07 11:58

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.

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onthefence · Jan 14 07 12:44

[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]

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[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]

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[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]

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[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]

Lise · Jan 14 07 06:07

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.

Lise · Jan 14 07 06:13

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]

P.C. · Jan 14 07 08:34

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[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.

Sportsdude · Jan 14 07 09:32

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.

Lise · Jan 14 07 10:05

Well said, PC, well said indeed.

onthefence · Jan 15 07 01:54

[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]

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[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]