I'm not really in a position to judge, but

I will. This seems more than a little extreme:

Frozen in time, the girl who can never grow up

Treatment keeps girl child-sized

Parents defend decision to keep disabled girl small

Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma

Parents of a child in a vegetative state have had her have a hysterectomy, breast surgery to inhibit breast growth, and large doses of oestrogen to ensure she doesn't grow beyond her present 9-year-old stature. They say they did this to make it easier to lift her and maintain a good quality of life.

That exposes her to surgical risks and who knows what the risk to those doses of hormones are, all for the convenience of the family. I'm really surprised they got doctors to do it; certainly it should have gone through an ethics review (that's not covered in the news, so it may have for all I know). Still, since the child is not able to let her wishes be known (and they're not even sure how much she is conscious of--only that she responds to music and seems aware of her surroundings--the parents do legally have a right to make medical decisions for their child.

On the other hand, it is wrong to sterilise a child simply because she is disabled. That's something they did decades ago; it was wrong then, it is wrong now. Tinkering with her growth to relieve a burden is wrong, too. The child remains anonymous, identified by the name Ashley (the parents refer to this course as 'the Ashley treatment' on a website defending their decision). I know the parents have gone out of their way to explain that they do not consider her a burden and that this is not why they did this to Ashley--they have several rationalisations for each step--but doctors and others are concerned about how this could set a precedent that would impinge upon the inherent dignity of the disabled, not to mention violate the primary tenet of 'first, do no harm'.

I can't say I support the decision. It seems wrong to me. I'm not in a position to change that decision, though, and in this case, the damage, if any, has been done. But I hope other parents don't go down this road. I don't know what I would do if I were faced with a similar situation, but I do know I wouldn't subject my child to these 'treatments' just so I could turn her in her bed easier, or not have to deal with a pregnancy should she ever be molested, as they gave as one of their reasons. One of my co-workers, when I mentioned this story, said, 'gee, if they feel that way, why don't they let her die and be done with it?' In other words, at the heart of it, this decision was selfish and not in the best interest of the child. What I think it really comes down to it is that the parents cannot accept that their child will grow into an adult without the ability to function as one, and that they can continue to care for a cute little girl, their 'Pillow Angel' as they call her, since they put her on a pillow and she'll stay there. There's some strange psychology in this situation, that's for sure, and I think the doctors involved should really be taken to task for going along with the parents' wishes in this case.

PS [01/05/07] In order to be fair, and because I am, after all, a medical librarian, I obtained the actual article reporting this case. (Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability. Archives of Pediatrics and Adolescent Medicine. 2006 Oct; 160(10):1013-17.) Some things I gleaned:

• An ethics review was made
• The main adverse effect of oestrogen therapy in such doses is thrombosis
• The authors make compelling arguments for this 'therapy' as a means of keeping more children in care at home rather than institutionalised
• They have a large section of the article regarding ethics of sterilisation and the history of the practice and the debate over it
• They attempt to answer the 'do no harm' objection

Still, their arguments, like that of the parents', seem to stretch a bit to fit what they want to be the case. No one knows what real effects this will have on this girl. Oddly enough, she is characterised with having minimal consciousness, yet the other concern as a problem for her other than her physical comfort (which the short stature and lack of breasts and menstruation is supposed to allow) is boredom. It seems to me that boredom does imply consciousness. I suppose you could characterise a lack of response due to lack of stimulation as boredom, but I'm not sure it truly applies. How do you judge responsiveness and interest in a child with minimal brain function?

I've read accounts from other parents who care for disabled children (on both sides of the debate). I recognise that 1) it is an extremely difficult job to care for such children, with little rewards and 2) our society is not supportive of home care and caregivers in general. I'm not saying that all that can be done to make the job of caregivers easier should not be done. I'm just afraid that this crosses an ethical line, blurring the details. What I'd really be interested in is how those dealing with disabilities would feel about this case.

I sought the closest thing to an ethics expert I could find and asked about this case. I was told that there was no reason the parents shouldn't seek this to make things easier in an already difficult situation. After all, they didn't expose her at birth. They are caring for her. From an Aristotelian point of view, as well, she does not truly meet the criteria for a person.

But this is a human being we're talking about, a person with a soul. She may not be able to truly live a rich life, but she does have a certain inherent worth and dignity. (Yes, that's the Unitarian in me). I just don't think carving and shaping a person to meet another's ideal of their physicality is right. I know I'm arguing from an emotional standpoint, and that invalidates an argument, but I still believe that this was wrong.

How eerie it will be for her siblings to grow up and go on with lives and she will remain a child, at least in appearance. I wish Ashley could go on to lead a normal life, but that isn't to be. It does seem she is genuinely surrounded by those her love her. I just can't agree with the way they show that love.

But again, it's not my call. It is definitely something that should be debated in an effort to solidify those blurred lines and make sure that medical practice is ethical and for the greater good.

PPS [01/07/07] I can't seem to just let this go. I keep coming back to it. Now that the doctors who performed this procedure are getting more requests for the 'Ashley treatment', I'm struck by everyone referring to other cases where children might be 'frozen' in development. But is it children, or is it girls? Not to play the feminist card per se, but how do you do this to a boy? Would you remove his testicles or give him some sort of hormone injection? Would anyone feel any differently if that kind of radical surgery was done on young boys? I think so. But how different is surgical castration different from a hysterectomy? And if it can be achieved chemically, isn't that a lifetime sort of thing, rather than the relatively short course of treatment in Ashley's case? Just wondering.