By DANIELA ALTIMARI
Courant Staff Writer

September 26, 2003

Even as a little girl, Betsy Driver knew her body was different.

It was only after she turned 35 and began poring over yellowed copies of her medical records that she uncovered the truth. When she was born, her anatomy did not fit the standard definitions of male or female, so doctors operated on her genitals to make her look more like a typical girl.

"One of the most basic things you're accustomed to hearing after having a baby is `Congratulations, you had a boy' or `Congratulations, you had a girl,' not `Congratulations, we'll have to get back to you,' which is what my mother heard," Driver said.

Hundreds of infants undergo genital surgery each year, but such procedures have grown increasingly controversial. Activists such as Driver are highly critical, saying children with ambiguous genitalia should forgo medical intervention until they are old enough to decide for themselves whether surgery is right for them. She helped form a group called Bodies Like Ours, which plans to stage its first protest at Connecticut Children's Medical Center in Hartford today to draw attention to its cause.

Some doctors agree. Dr. Philip Gruppuso, a pediatric endocrinologist at Brown University and Rhode Island Hospital, said genital surgery often isn't successful and sometimes leaves patients sexually dysfunctional.

"I just keep coming back to `First, do no harm,'" Gruppuso said, citing the physician's creed. "I'm far from convinced that the surgery does no harm. And it is permanent."

Other medical experts defend the practice of operating on intersex infants. In their view, allowing a child to grow up with ambiguous genitalia, and the schoolyard taunting and shaky self-esteem that often come with it, would be unethical.

"Intersex" is a broad term that encompasses a range of anomalies affecting the sex chromosomes, external genitalia or internal reproductive organs. Experts estimate that as many as 1 percent of all infants have some type of genital malformation, although the majority are relatively mild, such as hypospadias, a misplaced urethral opening on the penis. The Intersex Society of North America, an advocacy and education group, estimates that one to two infants out of every 1,000 born have surgery to "normalize" their genital appearance.

In the not-so-distant past, surgery was the only option for parents of intersex infants. Dr. Paul H. Dworkin, physician-in-chief at Connecticut Children's Medical Center, credits activist groups such as Bodies Like Ours for changing that.

"There have been advances in understanding as a result of research and as a result of advocacy," Dworkin said. "I hope what we do at Connecticut Children's reflects best practice and would address many of the concerns that groups like Bodies Like Ours have raised."

The organization targeted the children's medical center after learning that a nationally known pediatric urologist was scheduled to deliver a lecture and perform surgery Friday. However, Dr. Richard Rink canceled his visit after hearing about the protest. He did not return a phone call seeking comment, but Dworkin said Rink was concerned about the patient's privacy.

Dworkin said he welcomes a dialogue with Driver and other activists. Connecticut Children's Medical Center performs genital surgery on young patients, although never with the intent of altering a child's gender.

"This, like so many things in medicine, is never black or white," Dworkin said. "It's never surgery or no surgery. It's always multifaceted. ... The key is enabling patients, or in the case of young children, families ... to assimilate all the information so they can make an informed decision. The answer for Child A is more than likely to be different for Child B."

For Bethany Hays Park, the answer was clear: Surgery for her intersex daughter was out of the question. The girl was born nine months ago with congenital adrenal hyperplasia, a genetic condition affecting girls that often results in an enlarged clitoris and other signs of "virilization."

"I was very much in denial that she had any type of medical disorder," said Hays Park, of Olympia, Wash. "I just didn't feel like there was anything wrong with her at all. ... I just feel like I would have to educate myself."

Driver said she wishes her mother had a similar view. But that was nearly four decades ago, and parents then were far more willing to bow to the medical establishment than they are today, she said.

"My mother feels lied to and misled," Driver said. "She feels parents need to know it's OK to have a baby like me."

A former assignment manager for an Atlanta television station, Driver, who lives in New Jersey, left her job two years ago to focus on her activism full time. Her aim, she said, is to end the shame, secrecy and isolation felt by people with intersex conditions. Bodies Like Ours, which has a mailing list of about 500, is contemplating similar protests elsewhere in the country.

"When we have diabetes, we don't hide it," Driver said. "But when we're intersex, we do. People are afraid; they believe all these myths, like we have two full sets of sex organs and we can have sex with ourselves."

She compares the nascent intersex movement to the gay rights cause 30 years ago. "We're not freaks," she said. "We're the people who live next door to you."

More information on intersex individuals may be found at the Bodies Like Ours website, www.bodieslikeours.org; the Intersex Society of North America website, www.isna.org; the Congenital Adrenal Hyperplasia Research, Education and Support website, www.caresfoundation.org; and Dr. Richard Rink's homepage, www.iupui.edu/{tilde}urology/pediatric/rink.htm.
Copyright 2003, Hartford Courant. Reprint permission granted.

Janet Green, Cofounder and Board Members of Bodies Like Ours wrote a Letter To The Editor which was published on Tuesday, September 30, 2003. Read it.