the "Peter Pan treatment"?

I just read about this online. Apparantly docs at a children's hospital in Seattle did surgery on a severely physcially and mentally disabled little girl to stunt her growth. They removed her uterus and breast tissue to prevent her from menstruating and from growing breasts. And with hormone treatments, they would keep her small forever. i guess her parents said they decided to do this because she can hardly roll over and keeping her small would make it easiest to care for her. and not having to deal with a period every month would save her a lot of pain as well not having potentially large breasts. i dunno, i guess i can understand the reasoning, but it all seems a bit ... wrong. It does not strike me as ethical no matter the intentions. What do you think?

Here is a link to the story:

http://www.msnbc.msn.com/id/16473471/?GT1=8921

 

Creepy, maybe?

 

It is hard to judge because of the situation. Her father posted a 900 word reply to why they made the decision they did. It helped me understand the decision that they made.

 

http://ashleytreatment.spaces.live.com/

 

http://ashleytreatment.spaces.live.com/

 

I think that I'm not in a place to judge, as I've never been someone who had to take care of a person with a disability let alone one of that magnitude

 

the more I think, the more I get questions, but no answers

I don't think I have much of a position to judge, I can not imagine how hard of a decision this must have been for the parents

it's kinda like Maggie from the Simpsons now =D

 

I'm not able to really judge. While I obviously see problems with performing unneeded surgery on people unable to say yeah or neigh.

However, knowing how it feels to go through cramps and bleeding every month, if I couldn't ask for pain killers or some way to deal, I'd feel much worse. Not to mention, if she were placed in a care-home and raped, what could happen if she were capable of fertility? Or having large breasts putting pressure on your chest all the time, because you are always lying down.

Or being an adult sized body laying on the same pressure points all the time and how that would hurt, and cause bed sores. Or being too big for your care givers to take you easily from one social-room to the other?

I can't judge. It seems to have helped their family.

 

From what I heard, it was not so much not wanting to have to "deal" with her period, but to prevent her from getting too large to move easily, so she could still be with the famlly, go on family trips, and be taken care of at home, instead of an Institution. removing her uterus will keep her small, and easier to manage. I've worked with severe/profound retarded and autistic children (I don't mean Ausberger's like stuff, I mean girls with IQs of 20) who start having sexual feelings at puberty, often act out sexually, and often get too large and too strong for them to be taken care of at home. This neccesitates getting an institution for the child, which presents it's own problems, pregnancy only one of them. (being separated from the only people the child may recognize being a huge problem. Even very mentally effected people can get depressed.)

Many mentally defective girls get pregant against their will every year. In addition to being able to keep her at home and having her movable, I have to say, although it sounds like a horrible thing to do to a child, it may be the less of many evils.

 

I have to agree w/ maggie. Granted, I'm not a parent and have never had to make a decision of this magitude regarding someone else's life. But I believe that in this situation, her parents were really caught betwen a rock and a hard place. No, it's not the natural order of things. But is it better for them to take what some may belive is drastic action now, to hopefully prevent extra health issues, suffering, etc..? Clearly they thought so. I dont know. I guess, like duck said, the more I question it, the more questions I have.

 

everything is natural by the way

 

I 100 percent agree. Keeping her mobile is crucial in the case of an emergency. As someone who has done everything from direct and create programs for kids with special needs to just working as an spec ed aide in a classroom I can tell you that when an emergency happens it is crucial to be able to life non-abulatory people. Not being able to can be life-threatening.

 

she looks like she has been very well taken care of. Many kids with that type of diagnosis are practically skeletal and joints severely contracted. It sounds like they have her long term best interest at heart.

 

its not our place to judge something we have no idea about and haven't had to deal with

 

My stepdaughters came to live with me at ages 7 and 9. Both of them came to live with us after being diagnosed with a fatal genetic disease. The oldest passed on about three years ago, at the age of 24. The disease they suffered from allowed them to grow, but also made them quadruplegics. My husband and I have both got hernias from lifting the girls improperly.

When we first got them, my own mother insisted I look into getting pills to "dry them up", meaning that the girls should never menstruate. I was appalled, and refused. I figured the girls had enough health problems without me adding to them. It seemed unethical to me.

However...

I can't judge these parents. My husband and I have hurt our own health caring for these girls, and we try very hard to keep the surviving sister free of pressure sores. So far, so good, but I have to wonder: if she were smaller and lighter, would it be easier on her?

I'm sure these parents are good and loving. They chose to keep their daughter at home rather than institutionalize her. I'm sure they agonized over their decision to have their daughter undergo these surgeries. I'm sure they have done what they believe is the absolute best for the child AND the rest of the family. I will not judge them.

 

from the "commentary" link in that article:

I'm absolutely certain this family, unless they are unbelievably wealthy, does qualify for assistance, home health care, and a hoya lift. And if they are unbelievably wealthy, they can pay for those things themselves. I'm also certain that, at least in my community, everyone in town would be chipping in to help them any way they possibly could. If the parents are too "proud" to accept help, that's their problem. I can't wrap my mind around anything that could ethically justify what they have done to their child, and then to say it's for her own good. ick. she's a human being, not a family pet.

 

You would not believe that hassles we went through trying to get in home support for our two, beginning with the worker that took my application mocking me and threatening to call my stepdaughter's social worker. You would not believe the hassles we still go through trying to get proper medical attention, equipment, and treatment for my surviving stepdaughter.

As for a community willing to chip in? Yes, there have been some helpful, generous and well-intentioned people along the way, but the help only extended so far. Other people have families of their own to take care of. The girls' own mother couldn't even be bothered to do anything with them every other weekend as she promised the girls when she left them at our church, and she makes good money.

This is not a perfect world, and the route this Ashley's parents took is not perfect. But I can understand them feeling this was the best they could do for their daughter. She is in a stable, loving environment, with her brothers and siblings. She is in a family. Isn't that better than being in an institution with strangers?

 

They did that in Canada in the 30's and 40's it was called Eugenics (sp?)

 

I have to write a paper on a controversial medial issue for my final research paper/exam, and I chose to write about this, becuase it's so fasinating to me. I believe the parents did the right thing, but I'm trying to look at it on both sides, and I think writing a paper would help me understand it better. A bunch of people were on Larry King last night discussing it, and this one woman who was in a wheelchair becuase of a car accident kept raving on about how her rights were violated and whatnot, and that with that logic they might as well just chop off her legs becuase they don't work, but that just seemed to be a very unreasonable argument to me. But man, people don't understand that she is at the mental level of a 3 month old. She would be going through things that would torture her. It tortures most people who go through it at a normal intelligence level, but a 3 month old?! I bet she'll live a much happier life with a body closer to her intelligence level than having the body of a full grown woman.
And they all seem to have benefited from that choice, so I think it's a good thing all around, but who knows...

 

but she's a person. It's her body, and something very major was done to it without her knowledge or consent. Being a mature woman is not torture. The only people who benefitted from this decision were the people who made the decision, not the victim of that decision. But since they are bigger and smarter, they are the ones who count? How do you think the world would react if Ashley had been a boy, and they castrated him for his own good?