Six years ago, President Bush's bioethics council opened its inaugural meeting with a discussion of The Birth-Mark , a Nathaniel Hawthorne short story. Council member Bill May summarized the plot , in which a scientist "loves his wife but kills her in the attempt to remove her single imperfection, a birthmark on her left cheek." For nearly an hour, the council sat around debating what the mark symbolized.
Today, the council has run its course—the Obama administration will probably replace it with a more sympathetic panel—but the news has come back to birthmarks. The Vascular Birthmarks Foundation and the Vascular Birthmark Institute of New York just held their eighth annual Vascular Birthmarks Conference , at which dozens of families met with doctors to discuss surgery and other medical options. The New York Times reports from the conference:
"We can no longer accept that a child can go through life being severely disfigured, and accept that as their lot," said Dr. [Milton] Waner, the co-director of the Vascular Birthmark Institute. "Something needs to be done, and I believe that every child has the right to look normal." ... Much of the concern, for many families at the conference, was financial. Doctors said insurance providers frequently refused to pay for the treatments, classifying them as cosmetic surgery. "Their definition of cosmetic is very broad," Dr. Waner said. "This is not cosmetic."
Strictly speaking, Dr. Waner is incorrect. Disfigurement per se is cosmetic. Merriam-Webster's medical dictionary, on which the National Institutes of Health rely, defines cosmetic as "of, relating to, or making for beauty." It defines cosmetic surgery as "correcting defects especially of the face." One question is whether insurers should cover such procedures. Beneath that question lies another: Do children need them?
When you read about these kids and the abuse they sometimes endure for looking unusual, your heart goes out to them. One mother tells the Times about a boy who walked past her son and said, "Look at your face. You look ugly." But which is the problem, the birthmark or the bad attitude? Something needs to be done, but is it surgery? Is every child entitled to "look normal"? Or is he entitled to respect regardless of how he looks?
As it happens, surgery for the kid who was called ugly is a no-brainer. That's because his disfigurement had functional effects, enlarging his tongue so he couldn't speak intelligibly. Dr. Waner and others who take on such cases pro bono are doing noble work. But the quest for normality can extend to iffier cases. The Times describes a baby at the conference who "has a circular, purple mark on her forehead about the size of a nickel." Such defects, known as hemangiomas, "often disappear or shrink in 10 to 12 years, but they can have a social and psychological impact—on children in particular, who must live with the stigma of looking different." Is that a good reason for surgery?
I'm not saying kids with purely cosmetic defects don't suffer. They do. But their suffering isn't medical. It's social. Cosmetic surgery changes an otherwise healthy body to fit culturally imposed aesthetic standards. If a purple mark on your forehead is too much to bear, what about male breasts? What about a flat female chest? How far should we extend the "right"—and, implicitly, the obligation—to look normal?
We had a vascular birth mark in my family. It was considerably bigger than a nickel. In time, it subsided and vanished. The child who was born with it had something more important than the right to look normal. She had the right not to.
P.S. It looks like our "discuss" link is still broken, so here's a handmade link to the HN fray in case you'd like to join the discussion: http://fray.slate.com/discuss/forums/2100253/ShowForum.aspx .