Intersex Peer Support::Bodies Like Ours

By MIREYA NAVARRO (NYT) 2293 words

Published: September 19, 2004

AT the moment after labor when a mother hears whether her new child is a boy or a girl, Lisa Greene was told she had a son. She named her baby Ryan and went home. Ms. Greene learned five days after the birth that her baby was really a girl.

Doctors who ran tests diagnosed congenital adrenal hyperplasia, a condition that, put simply, can make baby girls' genitals look male. As the young mother struggled to get over her shock, to give explanations to relatives and put away the blue baby clothes, she also had to make a decision: whether to subject her daughter to surgery to reduce the enlarged clitoris that made her look like a boy, or leave it alone.

Thus Ms. Greene, a 26-year-old cashier in East Providence, R.I., was thrown into a raging debate over a rare but increasingly controversial type of cosmetic surgery.

For decades, parents and pediatricians have sought to offer children whose anatomy does not conform to strictly male or female standards a surgical fix. But the private quest for ''normal'' is now being challenged in a very public way by some adults who underwent genital surgery and speak of a high physical and emotional toll.

Some of them gave tearful testimony at a hearing last May before the San Francisco Human Rights Commission, which has taken up the surgeries as a human rights issue and is expected to announce recommendations before the end of the year. They spoke of lives burdened by secrecy, shame and medical complications: some said the surgeries robbed them of sexual sensation and likened the procedures to mutilation; others said they were made to feel like freaks when nothing was really wrong with them.

But a more common argument was that the surgeries are medically unnecessary and should at least wait for the patient's consent. Some doctors are starting to agree.

''Everyone's rethinking this,'' said Dr. Bruce Buckingham, associate professor of pediatric endocrinology at Stanford University. ''We're probably a little less aggressive than we used to be. There's a lot of opinion.''

But more opinions and inconsistent medical practices have made the decision tougher than ever for parents, many of whom are confronted with the word ''intersex'' for the first time. The term describes cases that arise from a host of conditions that cause sex chromosomes, external genitals and internal reproductive systems not strictly to fit the male or female standard.

Although no national statistics are available on the surgeries, some pediatric urologists and surgeons say they are doing fewer of them early. Doctors say the majority of cases involve girls with congenital adrenal hyperplasia, or C.A.H., a hereditary disorder that affects the synthesis of adrenal hormones and leaves girls with high levels of male hormones. The condition may cause not only male-looking genitals, even in the presence of fully formed ovaries and uterus, but also personality traits and interests typically associated with boys.

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.