When Gender Isn't a Given
Page 2 of 4 -- The incidence of anomalous genitals in C.A.H. patients is not known precisely, but some studies indicate it may occur in as few as one in about 30,000 births because only girls are affected. Surgeries for other intersex conditions are even rarer, doctors say. But for the minority of parents who must choose whether surgery is the best course of action, the decision is unlike most others they may make on behalf of their children.
Some parents say they choose largely in the dark because there are no comprehensive long-term studies showing how patients fare as they grow up, with or without genital surgery: data on sexual function, for example. At the same time, some parents note, some doctors inform them of the option to do nothing, while others advise to do the surgery right away.
There is the steady drumbeat of opposition to surgery from a vocal intersex movement, but some parents wonder whether there is a silent majority of satisfied patients. And then there is the question: What would the child want them to do?
Worries about such an intensely personal matter often surface anonymously on computer message boards. "It's very hard to know what her feelings will be when she is older," read one message posted this summer on a Web site for families affected by congenital adrenal hyperplasia. "Will she hate us for letting her have the surgery? Or will she thank us for having it done when she was young enough not to know?"
In Rhode Island, Ms. Greene said she was confused and overwhelmed at first, not just with the news of her baby's change of gender but also with medical problems related to C.A.H., which kept her daughter in and out of the hospital for the first year. Ms. Greene said that at first she was determined to do a clitoroplasty, or reduction of clitoral size, fretting over whether people would call her daughter hermaphrodite, a term from Greek meaning one with male and female sexual organs, and suggestive, in modern times, of a sideshow attraction.
"She looked identical to a boy," said Ms. Greene, explaining that in addition to a large clitoris, her daughter's labia was fused together and she had no vaginal opening. "It's hard for a parent not to think of the psychological damage." She said she was speaking candidly because "in a way, I'm telling other parents that it's not something to be ashamed of."
Ms. Greene said her child's doctors recommended against surgery, warning her of risks like possible nerve damage. Skeptical, she went to the library to do her own research and on the Internet, where she said she sent e-mail messages back and forth with adults with the same condition. Continued...