thoughtful sadness

[jrtom]

http://news.bbc.co.uk/2/hi/americas/6229799.stm

I really don't know what to think about this.

I'm generally against surgery that doesn't provide some necessary medical function...but "necessary" can be slippery.

The parents have acknowledged that their child is never going to be mentally more than three months old, and I find myself wondering what I would do if I knew that I was going to have a child with that condition--or if I found out that I already had one (i.e., it wasn't apparent before birth). Especially considering that we all went through that period (of being three months old) at one point.

I don't think that there's anything that could be done with this situation that I'd be satisfied by.

Update: Here is the website that the parents have put up: http://ashleytreatment.spaces.live.com/

Something that occurred to me after the initial flurry of comments (that's come to mind in analogous circumstances before): since Ashley (the child) is expected to have a normal lifespan, her parents are implicitly committing someone else--her siblings, other relatives, the state--to taking care of her once they're gone. This complicates the moral issue still further.

Comments

Surgery

[fdmts.livejournal.com]

The thought that came to mind, reading this, was a comment in Richard Dawkin's latest book, The God Delusion. Something on the order of:

Our species is the only one not allowed to go to the vet to be painlessly put our of our misery.

Re: Surgery

[jrtom.livejournal.com]

Well...we're also the only species that we consider capable, at least most of the time, of legal competence (that is, making decisions for ourselves that can't legally be overridden by others).

That is, animals aren't allowed to go to the vet to be euthanized; _we_ are allowed to _send_ animals to the vet to be euthanized.

And on that subject, thus far I haven't been unambiguously forced to that decision...because of two cats that I've had that have died, both were at home. The first one died somewhat unexpectedly, and the second died after a few months' illness, but in such a way that it was never clear to me that they were in a lot of pain.

But if it ever comes up, I will be torn because it will have to be my decision, not my pet's. I can deal with helping someone to die if they can ask for it (and more codicils, but you get the idea), but it's a hell of a decision to have to make for anyone else.

[tildequinn.livejournal.com]

one of the things i keep thinking is i remember my 3 month old, how she liked to be held, how nothing would console her more than an all encompasing cuddle. if they can keep her small enough that she can still have that, that thing that 3 month olds want most, go for it.

[jrtom.livejournal.com]

That's part of it, yeah. I know what it's like to have a 3 month old, and something of what they seem to want.

If we were talking about parents who had deliberately engineered a child with this condition, I'd know what to think about that. (Probably.) This is just...hard.

[zandperl.livejournal.com]

Wow, three month old mind perpetually. that alone is hard enough for me to grasp before I even consider the ethical concerns of stunting her growth. I didn't see anything about her life expectancy, that's another thought for me. And should it be normal, what's going to happen to her after her parents die? wouldn't it be easier to find her competent caregivers if she had an adult body at that time? so bizarre.

[gwyd.livejournal.com]

I've worked with children like that. I've spent a lot of time thinking about what the parents go through. I am very, very glad it will never be my choice.

Having seen severely disabled girls with menstral cycles and with the medicine that blocks them, i honestly believe that a hysterectomy is the kind thing to do. I will not go into the details, but trust me when i say that the side effects are rough for long term use on the drugs and tthe other option is no good for anyone involved, especially the child and the poor bugger who has to clean up.

I read a longer article with a better explanation of the breast removal. They were talking about the child's discomfort because she lies down so much and can't communicate pain. I'm not sure how I'd feel about this in their place, so I can not judge. same with the estrogen.

There are no good options when you child is like that he is lucky to have a stable family who loves her. They end up in foster care a lot or with single parents. There is so much stress on the parents that many simple can't cope with disability that severe. so i don't judge, mostly because I know exactly enough to have an idea of just how hard to deal with it is.

[gwyd.livejournal.com]

I don't think so. The larger they are the harder they are to care for. It's easier to find caregivers for the cute ones. Yes, this is cynical of me, but when her parents are gone, it will be super hard to find placements if her siblings don't take her. I'm willing to bet in family placement is her best bet generally. Institutional care is a lot worse.

Re: Surgery

[fdmts.livejournal.com]

I've thought about this overnight, and it seems clear to me in the light of morning: I disagree with the decision to keep this child alive, but I think it's certainly a decision that should be left in their hands. I think that in the long run, the family would be better served by letting her pass on and either adopting or having another. They are signing themselves up for decades of hard work and frustration. That energy could be better spent. Given that they are going to keep her alive, it makes a certain amount of sense to modify her body so that she'll be easier to care for.

As we gain more and more power to help marginally survivable humans live arbitrarily long periods of time, and to modify our bodies in really cyberpunk ways, we're eventually going to have to look at the underlying ethical issue of what it means to be "human." I hope that we realize that we're not really all that special. That the moment of birth (or the second trimester, for example) does not confer any particular status, nor does any particular level of genetic similarity with a reference human. Ethics ought to be built on the capacity for joy and for suffering ... not on a perceived similarity to "me."