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When Gender Isn't a Given

Page 3 of 4 -- In the end she consented only to creating a vaginal opening and rebuilding the urethra last year. Although whether vaginoplasties should be done early is also a subject of debate, Ms. Greene said her daughter, now 4 1/2, would have needed to undergo the procedures sooner or later to menstruate and for heterosexual intercourse. Ms. Greene deemed them medically and psychologically easier on the child if done early.

But Ms. Greene said she opted to wait for her daughter to grow old enough to make other decisions for herself. "They tell me that what I've done is the best compromise," she said.

Some parents weigh the same pros and cons and come out in favor of surgery, however. In San Jose, Calif., the 28-year-old mother of another girl diagnosed with the same congenital condition said doctors told her that today's surgical techniques spare nerves and are less extreme.

To her the psychological issues seemed more crucial than the physical risks and her daughter underwent a clitoroplasty last month at the age of 4. "My problem is the adolescent period," said the mother, a medical assistant who spoke on condition of anonymity to protect the privacy of her family. "Growing up a teenage girl is hard enough. I never want her to feel different. I never want her to have extra issues to deal with."

"When she's a teenager, and she's in a girl's locker room, it's not going to be a cute situation," the mother said. "Society is a big issue here. I tell my husband, if we lived in a deserted island she'd never need this."

Jeff Spear, 37, a farmer in Maine whose 11-month-old daughter underwent a clitoroplasty along with other surgical procedures six months after birth, said he hardly considered the surgery cosmetic given how male she looked. Mr. Spear rejected the idea of waiting for his daughter's consent. "You're the parent, you make the decisions," he said. "We felt this needed to be done right now."

The more "virilized" the appearance, the more likely parents will choose surgery, said Kelly R. Leight, executive director of the Cares Foundation, a support and educational group for families affected by congenital adrenal hyperplasia. While more parents are beginning to question the surgeries, more often than not they choose to operate within the first year, said Katrina A. Karkazis, a medical anthropologist and research associate with the Stanford Center for Biomedical Ethics.

Ms. Karkazis, who interviewed parents, doctors and people who had undergone early surgery of the clitoris, vagina and testes because of C.A.H. or androgen insensitivity syndrome, another condition that affects the development of genital organs, said doctors and parents who favored genital surgery were driven by cultural factors, like their own values about appearance and worries about how the child would be treated by others. Most of the adults who had undergone the surgery as children, however, told Ms. Karkazis they were unhappy with the results and complained of lack of sensation or pain, of the need for repeated surgeries and of the fact that they had thick scarring and the genitals never looked "normal." Few were in intimate relationships, she said.   Continued...

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