Intersex Babies: Boy or Girl and Who Decides?

March 17, 2011— -- Jim Bruce was born with XY male chromosomes but ambiguous genitals. Doctors couldn't be sure if he had a large clitoris or a small penis and were convinced he could never live a "satisfactory life" as a man.

So shortly after his birth in 1976, Bruce's external organ and testes were surgically removed and he was raised as a girl.

He struggled for years, preferring "rough and tumble" play and being attracted to girls.

"I was unhappy, but it was really difficult to ask questions," said Bruce, now a 34-year-old writer from California.

When he was 12, Bruce was given female hormones so his body would feminize. Then, at 18, he prepared for a vaginoplasty -- "designed to allow me "to have sex with my husband."

But he knew something was wrong and, battling depression, sought his medical records when he was 19.

"I knew that I wasn't a girl," he said.

What Bruce discovered was horrifying. "I was sterilized at birth -- and no one ever told me," he said.

An estimated 1 in 2,000 children born each year are neither boy nor girl -- they are intersex, part of a group of about 60 conditions that fall under the diagnosis of disorders of sexual development (DSD).

Once called hermaphrodites, from the handsome Greek god who had dual sexuality, they are now known as intersex.

Standard medical treatment has been to look at the genitals, determine the gender and then correct it surgically.

But now, many are challenging the ethical basis of surgery, knowing that gender identity is complex, and doctors can sometimes get it wrong, not knowing how a child will feel about their gender assignment when they grow up.

Advocates argue that surgery is irreversible and can have tragic consequences. In Bruce's case, he has been rendered infertile.

In some surgeries on virilized girls with ambiguous genitalia, removing sensitive tissue and vessels can ultimately rob them of sexual sensation as adults.

Bruce was born with a DSD that prevented his body from producing enough testosterone to properly develop his genitals.

After discovering the truth, he transitioned back to a man, taking testosterone shots and having his breasts removed.

Today Bruce works with Advocates for Informed Choice, a legal group to that promotes the civil rights of those who are born with sex variations.

"It wasn't that long ago, and parents were often led to believe they were doing the best thing for the child," he said. "They still don't know anything now, and they don't do any follow up."

At first he blamed his parents, but later realized, "they were only kids, 27 and 29, and they were scared. I never had any doubt my parents loved me very much."

As little as a decade ago, the medical community thought of gender as a slate that could be erased and then redrawn.

Today, gender identification is still not well understood, but experts say that when sex cannot be determined, it's better to use the best available information to assign gender, then to wait and monitor the child's psychological and physical development before undertaking surgery, if at all.

Waiting until puberty also allows the child to participate in the decision.

"Our chromosomes don't tell us who we are," said Dr. Arlene Baratz, a Pittsburgh breast radiologist who has two intersex daughters. "We expect XX is pink and a girl and XY is blue and a boy, but we know from children with gender identity conditions that is not always the case, even when their bodies are perfectly typical."