The "Ashley Treatment"

[emeleel]

Boy, here's a new one, and something I wouldn't want to trade positions with the parents for all the money in the world:

The article I stumbled across:

Frozen in time: the disabled nine-year-old girl who will remain a child all her life | Special reports | Guardian Unlimited

The parent's blog:

The "Ashley Treatment"

I don't think I would have ever thought of trying such things myself, if I had a child like this, but now that the "treatment" has been done on one person, it's out there. I would hate to have to think about whether or not I should do any of this for a child in this position. Some of it makes sense, but at the same time seems so horrifying.

[mjfrombuffalo[$]]

Given the extent and severity of her problems, I give her parents credit for keeping her home. I know they say the surgery wasn't for their convenience, but it's a side effect of the surgery and it could head off eventual residential care placement.

[pippadaisy[$]]

How the hell were they able to get it authorized?? My aunt and uncle tried unsuccessfully for YEARS to have a hysterectomy performed on my cousin, who is about at this level of MR, although she is able to walk. State wouldn't allow it.

[mtomm[$]]

I guess I need to see some really good arguments against it because I really don't see the big deal. If it makes caring for her easier then it makes perfectly good sense.

In fact, I have a cousin that would probably still be home and not at a care center if she had had such treatment.

[phoenixx]

Doesn't seem like a big deal to me. It fits the care situation and the patient.

[theworm[$]]

This must have been a very hard decision, but it was made for all the right reasons. I think it's so easy to tell others what to do or what not to do. These parents have a tough situation to deal with. Whether or not people agree with their decision, it seems obvious, to me anyway, that they love their daughter and made this decision for all the right reasons and with a lot of love.
I support them and their decision 100%.

[cristina1]

According to the parents' website, the decision was actually an easy one. They want Ashley to be as big a part of the family as she can be, and they really thought out many of the problems she would face as an infant stuck in a woman's body. I support their decision 100% and I think that in the long run, Ashley will benefit from the treatment.

[pippadaisy[$]]

My objections have less to do with the ethics and more to do with the actual process. How much pain did that put her through? Think about it... they pretty much did a double subcutaneous mastectomy on her. And what about the long-term effects of the hormones? They pulled how many estrogen studies because of the likelihood of cancer... what will that do to her?

I don't think it's a simple decision of keeping her small and in a child's body, but rather what on earth all that will do to her long-term.

[cristina1]

But there are severe risks with a bedridden adult, too, and we know all too well what they are. A friend of mine, bedridden for only a year, suffered from staff infections, hip deterioration and pneumonia, ending up needing a full hip replacement at the age of 21. These problems had nothing to do with her illness, but were side effects of being bedridden. She, at least, was coherent and could express her agony and pain. Ashley can't do that.

[pippadaisy[$]]

Oh, exactly, but limiting her size isn't going to prevent things like that from happening.

[cristina1]

Limiting her size allows her to be moved around more frequently and easily, which can help prevent that from happening. And the studies the parents' doctors used showed that bedridden children have an easier time than bedridden adults - probably due to the size factor.

[mtomm[$]]

The health impact on the parents must be considered. I have a brother that is the caretaker of his quadrapalegic adult son. Major hard on caretakers backs and health in general and size really does matter.

[hadassahchana[$]]

I can hardly write about this right now- but just read this next bit carefully:

"We didn't. It was easy," he said. "We clearly saw the benefits to Ashley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."

It's ok for a 9 year old to lie helpless but not a fully grown woman?


More later, when I can calm down. Hint: I read Ragged Edge all the time.

[drmomentum[$]]

The criticism of these parents was harsh on the local radio this morning.

I came close to feeling that I would wish their situation on a couple of the critics. I was surprised at the lack of compassion for the parents.

[theworm[$]]

I really do understand that this is a hot topic. I would hate to be in their situation and have to make a decision one way or the other. I don't know if there is a clear-cut right or wrong. I do believe that their intentions were 100% respectable and that they love their daughter very much.

I think it's easy for the rest of us to say they did the right thing or they did the wrong thing, but without "walking in their shoes" I don't think any of us can really say what is the "right" thing to do.

None of us know now whether this will make their daughters life better or worse. They made their decision and they had their physicians' support.

I wish them all the very best.

[cristina1]

None of us know now whether this will make their daughters life better or worse. They made their decision and they had their physicians' support.

This is true. Their reasons were to try to make her life better. If that doesn't happen, well, time will tell. But they did what they felt was necessary for her, and I support that.

[hadassahchana[$]]

I don't think that the parents are only to blame- I'll stay away from that for the time being- although I honestly don't understand how they could, and so flippantly, too.

Instead, what one of the doctors said is exactly right - the real problem in this case is that we don't make quality care affordable for those with disabilities. Surgically altering people in order to make it easier to care for them is...I can't even begin to convey the horror of that. It's way past eugenics, to me. It's a nightmare, at least to anyone who has really sat down and thought it through. It falls into the same category as parents who must relinquish custody of their severely handicapped children to the state in order to get care for them. This has happened frequently here where I live- one such parent was a very close friend who was a single parent incapable of careing for a child with numorous disabilities. Putting the entire burden on the parents is horrible. No one should have to make that kind of decision alone.

But still, just part of me still is horrified at the choice they;'ve made. I don't have to walk in those shoes to know that they sure don't fit me.

[emeleel]

I guess what I worry about more is where do you draw the line? I don't think I have a problem with this girl or anyone in her situation - she is a 3 month old trapped in a larger body, and nothing's going to change that. But how far from that do you draw the line of "okay, HERE is okay to do this, HERE is not"?

[cristina1]

I don't have to walk in those shoes to know that they sure don't fit me.

Cindy, you are a very special person. I can't say the same thing about me. I would have to be in their situation to be able to say what I would do. And I do believe the parents wanted what is best for their daughter. I thought the reasons behind what they did made a lot of sense. Why make Ashley suffer through menstruation when she will never be able to decide that she wanted a baby? If stunting her growth allows her to be with her family more, then perhaps that isn't a bad thing.

Perhaps I just can't think of an alternative care for this poor girl except being in an institution with strangers and her parents visiting her. It sounds so cold to me.

[hadassahchana[$]]

Oh, sterilization doesn't bother me- if the procedure is being done to protect the child, then I'm good with that. Allaowing someone with her intellect to get pregnant would be just horrible. It's the extra procedures - hormone treatment, surgery on breasts- that carry risk. I'm not explaining myself very well. I think what I'm trying to say is that instead of saying that allowing her to have an adult body with a child's mind says more about us than her. Why exactly is it horrible to allow both? She isn't always going to be 9. Saying that a grown body with a child's mind is grotezque does not respect the ways in which she is unique. I'm not saying that just about this child, but about any disabled person or child. People with disabilities are diffeerent- pretending that they aren't or altering them to make the able-bodied less uncomfortable is preventing them from being treated with the respect and kindness which they are owed, just as the able-bodied are owed.

Dang, I'm rambling. I do know what I mean, I just can't figure out how to express it. It's just that I don't see disablities as tragedies- I tried to adopt a baby girl with Down's syndrome several years ago, and I was heartbroken when I wasn't considered. I'll be back later- still trying to sort out what I mean.

[theworm[$]]

Cindy, I think that you are explaining yourself very well, and I totally understand.

[hadassahchana[$]]

I just found a disabled blogger's post on Ashley, and he gave