Wednesday, May 09, 2007

Pillow Angel

This morning I had to go take BLS for healthcare providers, in preparation for the ACLS training I need when I start training. I've taken BLS so many times I could probably teach the course, but I can never remember how to perform CPR on infants. (I just don't care. Ok, I'm just kidding, I'm sure as an obstetrician that might be important, I need to pay attention, I should take my job more seriously, BLAH DE BLAH.) The only thing I do remember is that you try to wake the baby up not by shaking said baby by the shoulders but by clapping in baby's face and screaming, "BABY, BABY, ARE YOU OKAY?" It sounds dumb but it's hilarious when you have to practice the entire sequence and the first part is running up to the little plastic baby mannequin, clapping in its face then asking it if it's okay.

***

I was reading on CNN yesterday that a state investigation into the treatment administered to the Pillow Angel found that the operations were illegal. We talked about this case in an ethics session we had on rehab medicine, so I had kind of been following it to see what happened.

In a nutshell, a girl was born with severe cognitive handicaps. Her disability was such that she would never talk or walk and was 100% dependent on her parents for all of her care. Though her body continued to grow and develop, her cognitive level remained infantile. Her parents approached her doctors and asked them if they could stop her growth. She received high doses of estrogen so her period of growth was shortened and terminated, and her breast buds and uterus were surgically removed. Her ovaries remained in place so her body could continue to produce sexual hormones. Now, Ashley is less than 5' tall and has never undergone puberty in the sense that she will never menstruate or develop breasts.

This was an extremely tough case and I have no idea how I would have voted if I sat on the ethics committee that had to decide this one. Many disabled rights and women's groups have decried the treatment as paternalistic but the truth is, for someone so cognitively impaired, does it matter how tall she is? Menstruation is traumatic even for cognitively sound girls, how would someone with such limited capacity for understanding what was happening to her body cope with monthly bleeding, which she wouldn't even be able to take care of herself? Ashley's parents were immediately called out for being selfish and asking for this procedure out of convenience (the smaller child would be easier to care for) but I can't help but think that the benefits of the treatment outweighted the disadvantages. Her small size ensured she would never become a burden to care for, thus minimizing any resentment or lack of personal connection her caretakers might develop.

On the other hand, it's a slippery slope. How impaired is too impaired to get to hang on to your reproductive organs? Sterilization of a minor sounds, well, terrible.

The real question is about Ashley's quality of life. Will she be happier remaining childlike forever? There's no way of knowing, but I don't think it's inappropriate that her parents and medical team made an informed decision for her wellbeing.

2 comments:

Redspiral said...

I feel wanted! :D

Ini said...

I'm so glad that you are posting again (and that I can see it), you have no idea how much I missed by daily procrastination!

As for the pillow angel case I think the right decision was made ethically. I know that there is certainly a lot of uproar about paternalism in the Australian medical system, but why would you let someone suffer any more than they should?