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Saturday, July 29, 2006

Repairing faces (and other parts), 2

I posted recently on a book on the ethics of surgery. I also read a second book, Surgically shaping children: technology, ethics, and the pursuit of normality, edited by Erik Parens. (Johns Hopkins, 2006) This one dealt with surgery for ambiguous genitalia, surgery to make dwarf children taller, and surgery to repair cleft palates and similar conditions, all in children.

This book had a wider range of contributors than the first one I read. They included persons who had the conditions described, parents of such, as well as ethicists and health providers. Partly for that reason, it would probably appeal more to the general public.

A few things stood out. One of them was suggested by the subtitle. Normality. What is it, and why do we pursue it. A particular dilemma was presented several times. That is this: "If diversity is to be affirmed, why would we expect children with facial 'abnormalities' to undergo surgery?" Why not just let them be, as long as health isn't threatened severely (or at all)? How much of such surgery is done for the sake of the parents, or the rest of us, not for the child?

Another aspect that stood out was that it is important to involve the child in decisions about surgery. This is not to say that, say, a nine-year-old is fully competent, but that a she should have an explanation of what is proposed, and how it will affect her, and have influence on the decision whether or not to operate.

I was surprised to find out that at least some persons who have had surgery to "repair" ambiguous or otherwise abnormal genitalia wish that they hadn't had it. It apparently often destroys sexual feeling. Another reason is that such surgery is usally done without involving the patient in the decision, because it is done on babies. Apparently this is not necessary.

Finally, there was a discussion about the training of surgeons. Surgeons are generally people who like to get in there and fix things, so are reluctant to hold off on surgery. They are also often not particularly well trained to work with the whole patient.

This book was certainly food for thought.

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