Controversy Over Operating to Change Ambiguous Genitalia

Hida Viloria, 33, is not the least bit confused about her gender.

"I'm female," she says, "I just feel like I'm a different variety of female."

She's different because she was born with ambiguous genitalia. "My clitoris is much larger than, I think, the average size clitoris," she explains. "And so because mine is larger, it's grown a little more to where it starts to resemble a small penis."

Viloria had no idea she looked different from other little girls until she was 11, when she saw one of her friends as they changed into their bathing suits.

Thousands of girls like Viloria who are born with ambiguous genitalia — known as hermaphrodites or intersexual — have routinely undergone surgery as babies to remove or reduce an enlarged clitoris.

Many doctors believe that operating on an intersex baby's genitals within the child's first year is best for both the child and the parents.

"We believe operating on the genitals in infants is psychologically better to do when the child is younger," says Dr. Kenneth Glassberg, a pediatric urologist. "I think the individual who is not operated on will have problems in society as we know it today."

The American Academy of Pediatrics also says early genital surgery may be best for intersex babies. But over the last few years, a storm of controversy has erupted over the ethics of surgery for intersex babies. Some intersex adults, like Viloria, who has not undergone any surgery, charge that the surgery, for cosmetic purposes, is nothing short of mutilation.

For Viloria, Information — Not an Operation

Growing up, Viloria says she was a popular, sociable tomboy who excelled at sports, but never doubted she was a girl. She got her period and knew she could have a baby some day. She did, however, hit a rough patch when she became sexually active. First she dated men, but then, like many intersex women, she says she realized she was a lesbian. That's when she understood just how different her genitals were from other women's.

"Everybody knows how penises function," says Viloria. "But clitorises actually function the same way. And so for an enlarged clitoris, there's a pretty visible difference when you're being sexually active."

Essentially, she explains, she had an erection: "I enjoyed that immensely, and so did my partners."

But she was mystified, and wanted some answers. "I did kind of wonder if maybe I was male," she says. "But I knew, technically, I wasn't."

At 27, she figured it out — far less traumatically, she says, than if she'd had surgery. She happened to see a newspaper article about intersexuals, a term she had never heard before.

"I just remember being like … Oh my God, I think this is me," she says. "I was overjoyed to know what I was."

Because her answer came from information — not the operating room — she thinks intersexuals should not undergo operations as babies. Instead, she says, they should be allowed to decide as adults if they want their genitals altered.

The Scars of Surgery

A growing number of doctors, who argue that the surgery is about as medically necessary as a facelift, agree with Viloria.

"We've heard more and more and more people coming forward saying, 'This hurt me, either physically, psychologically or both,'" says Dr. Bruce Wilson, a pediatric endocrinologist at Michigan State University. "To hear a group of people saying, 'I don't have normal sexual response,' 'I have painful sex because of the scar tissue,' 'I feel completely asexual because of what was done to me,'" says Wilson, was all he needed to lead the revolt.

Cheryl Chase is one of the angry intersexuals who had an operation at 18 months old. Doctors removed her clitoris because it was enlarged, a surgery known as a clitorectomy.

"I can't have an orgasm," says Chase, who believes her inability is due to the surgery.

Glassberg believes the clitorectomy would not have been performed if Chase were now an infant, because doctors now reduce the size of the clitoris instead of removing it. But some physicians say that even a reduction may damage nerves and interfere with sexual pleasure.

"Any time I think about it, and think about the fact that it could have happened, I just thank the universe above," says Viloria. "Accept that we're here," says Viloria. "Don't try to cut us up or change us or shame us or hide us."