Between The Sexes

DANUTA OTFINOWSKI FOR TIME
AMBIGUOUS: Elijah developed both male and female features. In January he had his ovaries surgically removed

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In recent years, however, the need for swift and irreversible intervention has been called into question. Adult intersexuals are stepping from the shadows to talk about their experiences, including the harmful effects they attribute to extensive childhood surgery. Some complain that they were assigned the wrong sex at birth. Others are more upset about the secrecy and shame their condition often elicited from their family. There is growing evidence that such surgery can interfere with the ability to achieve sexual gratification, that it can cause chronic incontinence and that the cancer risk may be exaggerated.

As these issues have emerged, the American Academy of Pediatrics (A.A.P.) has begun to reconsider its policy of endorsing early surgery for intersexuals. Dr. Ian Aaronson, a professor of urology and pediatrics at the Medical University of South Carolina, who helped write the A.A.P. guidelines, is coordinating what he hopes will be the largest-ever follow-up study of intersexuals to see what effects, good or bad, surgery has had on their emotional, psychological and sexual well-being.

Nobody is arguing that babies should be raised without a gender identity, says Dr. Bruce Wilson, a pediatric endocrinologist at DeVos Children's Hospital in Grand Rapids, Mich. "Those decisions should be made reasonably quickly, within a few days," he believes. But in his view and that of a growing number of other doctors, surgery can often be postponed until closer to puberty or even later, when the child can more effectively participate in the decision and help ensure that the surgically fashioned gender fits the child's subjective sense of self.

There is a larger social issue to consider. Despite the many changes in gender roles in recent decades, our society is still fixed on the idea that there are just two separate sexes. Is the rush to early surgery a matter of medical necessity, or is it a matter of social bias that leaves doctors and parents uncomfortable with nonstandard genitalia? It's a question that more intersexuals are raising. "Doctors have found a medical solution to what is essentially a social problem," insists Thea Hillman, board member of the advocacy group Intersex Society of North America www.isna.org ). "The problem has to do with differences and people's fear of differences."

Yet postponing surgery would carry its own burdens. "When children become aware of their body image at age 2 or 3 and compare their anatomy with others', questions are raised about the potential for psychological harm through their childhood," Aaronson says.

Either way, the decision to operate soon after birth isn't easy. In retrospect, Kelli's mom thinks she might have waited. "Parents can help their kids live with genitals that are different," she says. On the other hand, she acknowledges, postponing surgery might have been difficult too. "If we had left Kyle as Kyle, I'm convinced he would have felt feminine at times."

Part of what makes the decision so complex is that even when the chromosomes present a clear message on gender, anatomy may contradict it. Consider Sherri, a 45-year-old tax attorney from San Diego. Although her sex chromosomes are unambiguously XY, there is no doubt that she is a woman. Sherri has androgen-insensitivity syndrome (AIS), a condition that affects prenatal development. All embryos start out with the rudiments of male and female reproductive systems. A sort of developmental tug-of-war ensues until, generally speaking, the male reproductive system predominates in XY fetuses and the female in XX fetuses. The external male genitalia will not take shape in an XY fetus, however, until after the embryonic testes form and begin to produce testosterone.

AIS occurs when a gene on the X chromosome prevents the fetus from responding to that prenatal testosterone. Because the genitalia cannot be masculinized, they assume a more female structure. But that's not all. In the complete form of AIS, the body cannot respond to testosterone at all and the baby develops as a female, although without a functioning reproductive system. When Sherri was 11, she was told that she could never bear children because she had been born with "twisted ovaries" that had to be removed when she was a baby. In fact, the "ovaries" were her testes. "No one ever explained to me what my medical condition was," Sherri says.

The secrecy that surrounds intersexuality may be the most damaging thing about it. Julanne Tutty, a 35-year-old assistant deli manager in a Boston supermarket, didn't learn she was intersexual until she was 31. During a routine visit to her doctor's office, she became curious about her voluminous medical records and decided to sneak a peek. They indicated her chromosomes are all XY, yet she was born with an internal vagina, two testes and a "flattened stump" for a penis. "I was stunned," she says. Eventually Tutty got a copy of her medical records. "It was like getting the missing piece of a jigsaw puzzle."