Parents defend decision to keep girl a child

[Evo]

"Until New Year’s Day, not even her first name was known. Ashley was a faceless case study, cited in a paper by two doctors at Seattle Children’s Hospital as they outlined a treatment so radical that it brought with it allegations of “eugenics”, of creating a 21st-century Frankenstein’s monster, of maiming a child for the sake of convenience.

The reason for the controversy is this: three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts, then treat her with high doses of oestrogen to stunt her growth.

In other words, Ashley was sterilised and frozen in time, for ever to remain a child. She was only 6. "

How bad is her condition? Is she capable of coginitive thinking? Should we "alter" people with brain disorders to make them easier to keep?

http://www.timesonline.co.uk/article/0,,3-2530561_1,00.html

 

[verty]

I don't see the problem. She can't walk/talk/swallow food. She is going to be a burden forever. If she can be given a better quality of life, why shouldn't she?

Of course I am highly suspicious that other people are qualified to judge what is a higher quality of life, but I don't see that she can ever really decide for herself in this case.

I don't see tampering with nature as a bad thing, if we can improve nature then that is ok. However I worry what people would use it for, like cloning pets which seems ridiculous to me, or even worse, cloning a daughter or son, but I don't think a prohibition is suitable. There is too much to be gained like organ harvesting for example.

I long for the time when we can screen foeti for disorders like this girl has and prevent this from happening.

 

[Evo]

I don't see the problem. She can't walk/talk/swallow food. She is going to be a burden forever. If she can be given a better quality of life, why shouldn't she?

Of course I am highly suspicious that other people are qualified to judge what is a higher quality of life, but I don't see that she can ever really decide for herself in this case.

I don't see tampering with nature as a bad thing, if we can improve nature then that is ok. However I worry what people would use it for, like cloning pets which seems ridiculous to me, or even worse, cloning a daughter or son, but I don't think a prohibition is suitable. There is too much to be gained like organ harvesting for example.

I long for the time when we can screen foeti for disorders like this girl has and prevent this from happening.

I don't see her quality of life being improved, but her parents have it easier. Why not cut off her useless limbs and install casters?

I feel for her parent's but, this was not done for the child, it was clearly for the convenience of the parents, but if that means they find caring for her less of a burden, I guess that's a positive. I'm mixed on how I feel about this.

 

[russ_watters]

Wow, tough case.

 

[twisting_edge]

Frankly, the case isn't a bad argument for euthanasia.

 

[radou]

Frankly, the case isn't a bad argument for euthanasia.

I don't agree. In order for one to give a rational (if possible?) judgement about this, one should know every medical aspect of her state known as static encephalopathy, as I have just read. If, even with her state, she has a level of consciousness which allows her to feel something which would be called happiness or experience any 'positive' feeling in any way at all, then euthanasia shouldn't be considered.

As for the question of this thread, I agree with Evo, since I don't see how it affects her life 'quality'. On the other hand, none of us can even imagine how it's like to be a parent carrying such a burden, but they'll carry that very burden until the end of her life, so I don't see any non-trivial reason to justify the need of these operations, since I believe she still needs an immense amount of care.

 

[dontdisturbmycircles]

Anyone have a link to the father's blog entry? I am interested in reading it.

 

[verty]

On the other hand, none of us can even imagine how it's like to be a parent carrying such a burden, but they'll carry that very burden until the end of her life, so I don't see any non-trivial reason to justify the need of these operations, since I believe she still needs an immense amount of care.

The burden is on you to provide a positive case against it. Unless she can be expected to make a rational decision in this regard at some point in time, I don't see that she has a say in the matter or that we should grant her such.

 

[MeJennifer]

Anyone have a link to the father's blog entry? I am interested in reading it.

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

 

[dontdisturbmycircles]

Thanks MeJennifer.

I feel sorry for the pre-med students as I am guessing that some of them will get asked about the morality of this case when applying to med school. People should be able to choose whether or not they want treatments like this performed on them, but what do you do when they can't? Sad story.

 

[loseyourname]

I feel an art film about this.

Edit: Okay, that isn't a very substantive comment, but really, I don't know what to say, though I do wonder how perception will shift when one day we are looking at a six year-old with the wrinkled face and grayed hair of a 70 year-old, assuming her condition (which I know nothing about) allows her to live that long.

 

[Monique]

I believe it is partly the parents that are afraid to see their baby, whom will remain in that same state, mature into a fully grown being. They'd rather keep her in that baby state in order to relieve them from the burden of caring for an adult. That's the feeling I get from it.

I mean, in the blog they mention "Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse." What kind of an argument is that? As if Ashley would have any notion of the abuse, it is the parents who are afraid to handle her.

I do see that her small size and lack of mentrual cycle would greatly enhance her mobility and easy of care-taking. Also, because of the reduced weight I also see that she will be less likely to get bed-sores.

So, two sides of the story. If this really improves her quality of life, I say that the treatment is legit. What use is an adult body for someone like Ashley?

 

[verty]

I believe it is partly the parents that are afraid to see their baby, whom will remain in that same state, mature into a fully grown being. They'd rather keep her in that baby state in order to relieve them from the burden of caring for an adult. That's the feeling I get from it.

Yes indeed. Although they didn't exactly choose to have this brain-damaged child and I don't think one could argue that it was both foreseeable and reasonably likely. This is an extreme situation. I'm sure there are many other people needing care, so if changes like have been done here lessen the load without penalty, it seems fine to me.

But yes, although it is fine the justification is still convenience.

 

[Astronuc]

How bad is her condition? Is she capable of coginitive thinking? Should we "alter" people with brain disorders to make them easier to keep?

Well -

Afflicted with a severe brain impairment known as static encephalopathy, she cannot walk, talk, keep her head up in bed or even swallow food.

She cannot take care of herself - that's pretty bad. For those not directly involved, just be grateful one does not have to deal with it. How many parents are sufficiently familiar with the necessary medical information and can make an informed decision? Not many!

How much care is necessary, how much does it cost, and who pays for it?

I've known several parents who've had to deal with chronic health problems of children. One couple I know has a daughter with hydroencephaly. The girl cannot talk, and IIRC, cannot walk, and must be hand fed. And the lifespan of such people is very limited.

One of my cousins has two children with CF, and a third died last year at the age of 21. The other two will likely die in the next few years because there is no effective treatment - except possibly a lung transplant (or heart and lung transplant), but that still leaves other organs (e.g. pancreas, liver) which may be affected, and which would likely need transplanting.

And then there are end of life issues. Wait until one has to make a decision on care of elderly parents who loose the ability to care for themselves.

 

[Chi Meson]

I do see that her small size and lack of mentrual cycle would greatly enhance her mobility and easy of care-taking. Also, because of the reduced weight I also see that she will be less likely to get bed-sores.

So, two sides of the story. If this really improves her quality of life, I say that the treatment is legit. What use is an adult body for someone like Ashley?

I totally agree. I say this as a parent who has to take care of 3 relatively easy children. I don't see how we can judge them from this distance. I don't think the decision was made lightly.

(Edit: to continue my point)
I just read the parent's blog. More than ever I am convinced we have no right to judge their decision. The parents stress that the treatment was not for their own convenience. Now even if they are outright lying (which I don't think--although to deny the "convenience factor" is being a little disingenuous), the increased convenience to the caregivers directly translates to an increased quality of life for the child.

 

[Curious3141]

I was feeling ambivalent about these parents till I read this (apparently sincere) entry in the comments section:

Do you have a way of contacting please? My son is in a similar condition: severely retarded and at age 8 he will soon reach puberty. I would like to investigate similar surgery to this. At least we can have his penis removed (we tend to have large ones in my family) as I understand that most retarded men will spend most of the day masturbating. He is still quite small but ideally I would like to keep him that way. Will the drugs you used with Ashley also work with a boy?? Please give more info!

Oh wow. Now someone else is thinking of physically mutilating their kid to make things easier for themselves. If he spends his whole day masturbating, so what? That's still a completely free and safe way to seek some small pleasure in the meagre life he's been given! If *they* (as parents) have a problem with that, then *they* have to find far more reasonable ways to deal with it, like patiently teaching their "retarded" kid about some social norms. To see them shirking their responsibility and just jumping to the emasculation option is beyond disturbing.

In the broader picture, is what Ashley's parents are doing really all that different? Females masturbate too, they get lots of pleasure from it, I'm sure. Is it right to deny her the ability to develop physically simply to make things more palatable for her caregivers? And help absolve them of guilt when they touch her? Are those good enough reasons to make some rather drastic and permanent changes to her body?

Whatever my feelings might have been on Ashley's case might've been, they've changed - I am now firmly against what the parents are doing. Because if we let one group of parents do it, and tell the world about it by a blog, we're going to get other crazies who want to lop off their "retarded" son's penis for their own perverse peace of mind.

 

[Chi Meson]

Oh, you've been had. That comment is obviously someone's rather cruel send-up. The author of that comment clearly does not have an 8 year old "retarded" son. The author thought he could make his point by "logical extremes." But Ashley's condition is not simply "retardation" (and that's a word used mainly by middle-schoolers) and the treatment was not simply "lopping off her breasts."

Read it again ("we tend to have large ones in my family") He sounds like a dick.Oh, did I say that?Do I get a warning?

 

[verty]

She is not merely retarded. This is not about retarded children.