Stanford author explores struggles of intersex individuals, their families and doctors
STANFORD, Calif. - Is the baby a boy or girl? Few things are harder for new parents than hearing their doctor say, "I don't know."
"It is shocking," said Katrina Karkazis, PhD, the author of a new book, Fixing Sex: Intersex, Medical Authority and Lived Experience, which will be released by Duke University Press on Nov. 14. Shame and confusion may overwhelm parents whose infant's anatomy doesn't match typical male or female patterns, Karkazis said. "It's not something you find in most books that prepare you for having a baby."
Karkazis, a medical anthropologist at the Stanford Center for Biomedical Ethics, wrote her book to examine the conflicts and struggles around treating intersex conditions. Intersex individuals, formerly known as hermaphrodites, have genetic, gonadal or anatomic characteristics that range from mostly male with some female features to the reverse. Some, but not all, intersex adults are infertile. The most obvious intersex diagnoses are made in infants born with ambiguous-looking genitalia.
For more than half a century, physicians advocated surgery to try to make such babies' genitals resemble typical anatomy. They might, for instance, reduce the size of an unusually large clitoris on a baby girl. Many doctors also encouraged parents to conceal from intersex children the facts of their medical histories. Though doctors were motivated by well-intentioned desire to help children become "normal" boys and girls, by the mid-1990s, intersex adults were saying the approach had been more traumatizing than helpful. Surgery destroyed nerve function in their genitals, these activists said, and secrecy left them deeply ashamed of their bodies.
Debate between the two groups became highly polarized by the time Karkazis began studying intersex in 1997, she said. Patients were calling surgeons butchers; doctors were characterizing intersex activists as zealots. Parents struggling to make treatment decisions for their intersex children had no voice in the debates at all.
For her book, Karkazis conducted extensive interviews with all three groups, the first time anyone had done so. In the past, researchers focused on the biology of intersex and on how intersex informed theories of gender identity development.
"I hoped to move away from the polarizing debates, stir up thinking, and really humanize the perspective of each group," Karkazis said.
All groups agreed that intersex infants need to be assigned a gender at birth; being reared without a gender is not socially or legally possible in a world that expects everyone to be male or female. Doctors run tests to study an infant's sex chromosomes and sex-hormone levels, and then use that information along with the infant's physical appearance to help parents determine whether to raise the child as a boy or a girl.
Beyond that consensus, debate continues. Many intersex adults told Karkazis families should wait to pursue genital surgery until a child can participate in decision-making. Some doctors now counsel a wait-and-decide approach, while others still recommend performing surgery before the child will be old enough to remember it. Parents, too, are torn - early genital surgery seems to hold the promise of fending off locker-room teasing, but may raise worries about their child's sexual function later in life.
"It's hard to think about a child's future sexuality," Karkazis said. "Parents and doctors are uncomfortable discussing it."
And while early surgery may appear to be a conclusive fix for intersex conditions, Karkazis cautioned that's not what her research showed. Many intersex people who had early surgery needed multiple follow-ups to deal with scarring and other problems, she found. And, regardless of whether children receive surgery, parenting challenges arise at each stage of development, as intersex children grow old enough to ask questions about their bodies, take sex-ed classes at school, date, form relationships and consider whether they want children of their own.
For her part, Karkazis has emerged from her research with the conviction that more attention needs to be paid to intersex individuals as complete people, rather than as specimens of unusual biology.
"We need to look at what contributes to the flourishing of human beings in general, and think about how to achieve that for these kids," she said, noting less than 1 percent of studies examining outcomes of treatment have looked at patients' long-term quality of life.
She also thinks brand-new parents need to get the message that a baby's intersex diagnosis isn't a calamity. We need doctors, Karkazis said, who will tell these worried parents, "I've seen this before. It's OK. There's no reason your child cannot have a marvelous life."
Stanford Medicine integrates research, medical education and health care at its three institutions - Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.