Intersex children find increasing medical, social support

May 13 2011 - 11:50am

SAN FRANCISCO -- Jeanne Nollman was a later bloomer.

She waited and waited for puberty to hit, and when she was 17 and still nothing had happened, she got tested -- and found out she had a rare condition called Swyer syndrome and would need supplemental hormones.

What no one told her until eight years later, when she demanded more information about her condition, was that she had the male X-Y chromosome pattern.

"That was typical back then, in the '70s," said Nollman, now 51 and living in San Leandro, Calif., with her husband and two adopted teenage children. "I guess they thought I might go jump off a roof and commit suicide with this information. But I must be an odd duck because I was just relieved."

Now she's trying to help other children -- and their parents -- learn about and even embrace their "disorder of sex differentiation," or DSD. It's the medical term for hermaphrodite, a word no longer used by doctors and patients.

Nollman helped organize a new San Francisco Bay Area support group for families to talk openly about the unique problems of raising kids with sex development disorders.

Such disorders, which affect as many as 1 in 3,000 births, include a wide variety of conditions. They range from something that's not obvious at birth, like Swyer syndrome, to babies born with ambiguous genitalia who cannot immediately be labeled male or female.

People with such disorders often describe themselves as intersex. Support groups for intersex children and families are starting up around the country.

The culture around sex development disorders -- both socially and medically -- has changed dramatically in the past decade, and certainly since Nollman was a child. Surgeries to "fix" an infant's genitals soon after birth, while still relatively common, are being questioned much more often as more is known about gender identity.

Often child psychiatrists are brought in soon after birth to discuss with parents some of the issues around performing genital surgery on babies and how to deal with gender issues that will likely arise as kids grow up.

"The idea that psychosocial care would be important, the idea that we would not automatically do genital surgery for every kid, the idea that you may not get gender assignment right, and that's OK -- all of this is understood now," said Katrina Karkazis, a senior research scholar at Stanford University's Center for Biomedical Ethics. She's helping build the DSD program there.

Decades ago, it was thought that what a child looked like from the outside, and how she or he was raised, would define his or her gender. That was the main reason "corrective" surgery was so common.

But cases emerged of children who'd had their genitals altered at birth, and later rejected the gender they were assigned. They were angry and frustrated, both at what had been done to them when they were too young to have a say, and often, at not being told the truth about their birth to begin with.

Parents, meanwhile, were burdened with guilt -- often because they felt they'd made the wrong gender decision for their child.

Parents and children still face those problems, DSD experts say. But at least now people are aware of the potential troubles ahead, and less likely to make rash decisions based on superficial sex characteristics.

But a heavy stigma is still attached to sex development disorder diagnoses, experts said. When Karkazis meets with new parents of intersex children, she said she emphasizes that the child isn't "unusual or freakish."

Nollman hopes that's the message parents get out of her new support group.

While social acceptance and medical care have improved dramatically since she was a child, Nollman knows firsthand that there is still a long way to go. She was featured on a short television show last year, and the comments people made online after it aired were mostly cruel.

"People are going to say negative things, and how does a family cope with that and get past it?" Nollman said. "Because of the shame and secrecy that surrounds this, parents often don't get the support they need for themselves or their children."

(Distributed by Scripps Howard News Service, www.scrippsnews.com.)

 

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