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Thursday, May 18, 2006

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Most people in the States can't even comprehend the concept of free medical care. I think if they did they'd demand it.

hi , my son was born on april 23 with an extra thumb on his left hand. at first it bothered me but now i have accepted it as gods plan for me .. when did your son have surgery? my son is scheduled for his forst appointment with the plastic surgeon at eight months..in dec .. waiting to hear from you ....
regards,
bianca

I find it very difficult that a huge range of natural human physical variation is medicalised and dismissed as an abnormality. Did the doctor that said it was medically necessary have any evidence to back up that assertion? What harm does it do to have an extra thumb?

To my mind, and I speak from personal experience, the real problem is in society's expectations of 'perfection'.

[sigh]

Morgan, I agree that it's a very difficult area to think about and know how to act upon.
I think the doctor was strongly implying that it was a matter of taking into account the whole child's life experience. So the issue of stigma, of being teased, of having an abnormality which has to be taken into account in various ways eg in wearing gloves, possibly in handwriting, using various tools ... who knows the ways it might have an impact to have a differently shaped hand? But the most important thing would be that it would be something that person would have to live with every day - having people react to it, being different in a fundamental phsyical way. Of course, there are many people with disfigurements etc who do have to live with them. But if relatively minor surgery could make it possible for a child not to have to live with that, well, obviously we took the decision to have that surgery, a decision which doctors did indeed present to us as the reasonable path to take. Which I'm not criticising them for. I think our doctor had seen a lot of stigma and torment among his patients over the decades.
I know that in other areas eg gender identity, surgical alteration is a much more loaded issue. And I don't think the two are equivalent issues, although they have some things in common, especially the idea of perfection, as you mention.

I'm not sure if this is what you mean by gender identity, but surgery is a major issue for people with intersex conditions. Corrective surgery is still routinely carried out on infants with ambiguous genitalia, even though informed consent is impossible for that child to give, the child's adult gender identity is unknown, and there's no physical reason to do the surgery. Only a presumption of future trauma, a presumed desire to be normal and an expectation that surgery will make someone normal.

I'm not saying that your decision was wrong, but that principle of informed consent is one that wasn't considered. It's a fine line - who wouldn't expect a cleft palate to be treated?

My feeling is that, at the very least, statements about what is best for the child should be backed up by evidence and peer support.

Hi,
Where was that surgery performed? I'm looking for a hand surgeon for a hand abnormality case.
Thnks for your help.

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