Debate Grows Over Using Surgery on Infants with Ambiguous Genitals

When Cheryl Chase was born in New Jersey in 1956, she says, the doctors “kind of freaked out.”

“They wouldn’t let my mother see me, and they wouldn’t tell her why,” she says. “After three days they decided to tell her that I was a boy, but I was terribly deformed.”

Chase was what doctors call an “intersex” baby--meaning she had ambiguous sexual organs. At least one in 2,000 infants is born this way each year, with genitals that don’t match their chromosomes or don’t conform to male or female norms.

Until recently, doctors have commonly operated on the genitals of such infants as soon as possible. Parents were traditionally told to keep the operations a secret, even when their children grew up. In Chase’s case, she was reared briefly as a boy and then, after surgery, as a girl.

Now such early surgery--performed long before the child can understand--is being challenged. Prompted by angry former patients, some doctors are urging a moratorium on surgery they regard as cosmetic.

The difficulty is that no consensus has formed as to when genital surgery is cosmetic and when it is necessary.

Chase was 22 before she obtained her medical records. She learned only then that she’d been reared as a boy named Charlie for a year and a half, after which, she says, her parents “found their way to some doctors who were newly minted specialists in intersex.”

She says she was diagnosed as a “true hermaphrodite” with ovotestes--gonads that could produce both sperm and eggs. She also had a uterus, a vagina and “pretty typical female genitals except for a large clitoris.”

“They determined that I had ovaries and could get pregnant,” Chase says. The doctors “cut off my clitoris [and] told my parents they had discovered that I wasn’t really a boy but I was a girl. . . . They told them they should change my name, move to another town and not tell anyone where they had gone.”

Chase founded the Intersex Society of North America in 1993, hoping to end the shame and secrecy surrounding intersex and halt the type of surgery that had left her scarred and unable to experience orgasm.

“In the second half of the 20th century,” she says, “doctors have treated intersex as something that is so freakish that it renders the intersex person ineligible for membership in society.”

Danette Ivey also underwent surgery as a child. Today she is trying to help others who, like her, were born with congenital adrenal hyperplasia, an enzyme deficiency that causes a baby girl’s genitals to be “virilized”--to look something like a boy’s. CAH, the most common intersex diagnosis, can be fatal without regular doses of steroids.

Born in 1966 in Lubbock, Texas, Ivey had nine surgeries between ages 3 months and 17 years. She says some were necessary--her urethra had to be repositioned--and some not--her clitoris was either removed or “buried so far that it’s not even possible to find it.”

“You feel totally violated,” Ivey says. “You lose all control of your body because you have your parents and the doctor saying, ‘We’re doing this to make you normal.’ In my mind, I was normal until they started cutting on me.

“Most of my life I wished I was dead,” says Ivey, who lives outside Houston, where she runs an Internet message board for people with CAH and delivers pizza for a living.

Her message to parents contemplating genital surgery for children: “Don’t do anything that is not medically necessary. Let the child decide when they are older, because once you do the surgery, you can’t go back.”

Medical practice since the 1950s has held that surgery is in order if a boy is born with a penis doctors believe will be too small for intercourse or if a girl has a clitoris more than 3/8 inch long.

Typically, a penis less than one inch long has been removed, along with the testicles. Doctors administer female hormones, and the child is reared as a girl. Clitorises deemed too long have been removed or reduced.

“Most doctors would feel uncomfortable leaving children with grossly ambiguous genitalia, to grow up through school with something unusual between their legs,” says Dr. Ian Aaronson, a pediatric urologist at the Medical University of South Carolina and chairman of the North American Task Force on Intersex.

Dr. Peter Lee, a pediatric endocrinologist at Hershey Medical Center in Hershey, Pa., says he strives for balance.

“If the clitoris is enlarged but still has the structure of a clitoris, one ought not to rush into surgery,” Lee says. But surgery may be indicated “when the genitals are such that they do not look female or male.”

Years ago, Lee concedes, doctors operating on girls’ clitorises made scant effort to spare nerve endings and preserve orgasmic potential. “The big emphasis was on the appearance of the genitalia,” he says. “Sadly so.”

These days, he says, “I’m confident there is a better result.”

Others are less confident.

“The truth is we have no long-term outcome studies, so we really don’t know if surgery hurts or helps,” says Dr. Justine Schober, a pediatric urologist in Erie, Pa. “It may normalize appearance, but there’s more to sexuality than appearance.”

The practice of assigning female sex to boys with small penises was pioneered in the 1960s by sexologist John Money at Johns Hopkins Medical Center in Baltimore. Money believed gender in infancy was so malleable that a genetic male consistently reared as a girl would adapt to life as a female.

The theory got a boost from one highly publicized case of a boy who was changed to a girl in 1967 after his penis was destroyed in a botched circumcision. In 1972, Money described “John/Joan” as a typical well-adjusted little girl.

The theory was discredited when that child, now an adult named David Reimer, disclosed that he had reassigned himself as a male at age 14 and was married and living happily as a man.

Dr. William Reiner, a psychiatrist and pediatric urologist at Johns Hopkins, says recent research indicates that men with small penises can function quite well as males.

Reiner says he’s found 36 boys who were castrated and reassigned as girls, and two-thirds of them have switched back to being boys.

These days the treatment of intersex children is in such a state of flux that parents can easily receive conflicting advice.

When Kelley Schultz, a corporate meeting planner in the Seattle area, gave birth to twins in 1998, she noticed nothing odd about her daughter’s genitals.

But at 6 months, Madison was diagnosed with CAH. (Her brother was not affected.) She had a mild case, but specialists at Children’s Hospital in Seattle determined she should have surgery to reduce her enlarged clitoris.

“It was a really hard decision because there wasn’t anything wrong with her in her functioning,” Schultz says. “But it did not look normal, and they could fix it, so why not fix it?”

Asked about the option of waiting until children are older and can make the decision themselves, she says, “I think it’s fine if a child has big ears or a funny-looking nose, but I think that when you are dealing with sexuality and those type of things, if you wait for your 13- or 14-year-old child to make that decision, there could already be psychological damage done.”

Cherie, a Californian who asked that her last name not be used, gave birth in 1993 to a son with a small penis and undescended testicles. It took almost four weeks to determine he had XY chromosomes and was a genetic male.

One “crotchety old urologist” suggested rearing the baby as a girl, Cherie says. He was overruled by doctors at UC Davis who advised her that “there’s no reason to turn this child into a girl just because he has a small penis.”

Cherie, who counsels other parents through the Ambiguous Genitalia Support Network, says her 7-year-old is a happy boy but if he decides to be a girl later on that will be up to him.

“My goal,” she says, “is for everyone to do what’s in the best interest of the child, to put the needs of their child ahead of everything else.”

On the Net:

Intersex Society of North America: https://www.isna.org

CAH Our Stories and Our Voices: https://www.cahourstories.net