A Question of Gender

Meet Emma, one of 65,000 babies born each year neither male nor female. Once surgeons made them into females. Now parents wonder if these infants shouldn't be left untouched

By Emily Nussbaum, Lynn Johnson|Saturday, January 01, 2000
RELATED TAGS: SEX & GENDER


Held upright by her parents, Emma shows off her church finery.  She is a little more than a year old, and the surgery to make her look like a girl has healed.

When Emma McDonald was born on September 15, 1998, doctors whisked her away so quickly her family barely had a chance to look at her. For hours, they waited anxiously for news. Then Emma's grandmother, Anita Jones, overheard a doctor speaking to a group of medical students. Alarmed, she hurried back to her daughter. "Vicki," she said, "that doctor called Emma a hermaphrodite." 

Months later, Emma played happily in her mother’s lap. “Hey, punkadoodle,” cooed Vicki McDonald. For 18 years, Vicki, now 43, pursued infertility treatments. Finally, she and her husband Charles turned to adoption, and now they have Emma: a solemn child with a gaze that locks in like a searchlight. She was also neither male nor female. The medical term is intersexual.

In the kitchen of the family’s Gainesville, Florida, home, Vicki changed Emma’s diaper, revealing ambiguous genitals. The child’s phallus was larger than a clitoris, but it lacked many of the structures of a penis and was bound down by foreskin. Emma had one testicle, no vaginal opening, and an enlarged urethral hole located where a vagina would have been. The structures looked lumpy and unfamiliar, but not startling. Within Emma’s abdomen are a rudimentary uterus, one fallopian horn, and an undeveloped gonad. Her chromosomes, Vicki explained, are “mosaic,” a pattern called XY/XO.

Emma’s particular condition is rare. But intersexuality, in a variety of forms, occurs in about one of every 2,000 births—about the same proportion as cystic fibrosis. Sex, in reality, is more than the simple blueprint learned in high-school biology—XX for female, XY for male. All embryos are identical for the first eight weeks of gestation, and then several factors nudge the infant toward male or female development.

But some embryos step off track. The cause can be chromosomal or hormonal. Infants with androgen insensitivity syndrome, for example, have XY cells but cannot process testosterone and look like females. An inherited condition called 5 alpha reductase deficiency, triggers an apparent female-to-male sex change at puberty. Congenital adrenal hyperplasia—the most common intersexual condition—results from hormonal imbalances that masculinize the genitals of XX children. Scientists speculate that such an imbalance may also masculinize the brain, establishing gender. Intersexual infants range from hard-to-classify children like Emma to those with much subtler anomalies. To some degree, intersexuality is in the eye of the medical beholder: A large clitoris may be considered normal by one doctor, ambiguous by another.

One thing all intersexual children have in common, however, is that modern medicine regards them, in the words of the surgical training videotape “Surgical Reconstruction of Ambiguous Genitalia in Female Children,” as a “social and psychological emergency.” Surgeons typically perform plastic surgery early on to protect the child—and, not incidentally—the parents, from any sense of ambiguity. Nearly all intersexual babies are assigned to be female, because the surgical techniques are better. In Emma’s case, doctors planned to remove her testicle, shift her urethral hole, and carve a labia and clitoris from existing tissue. The medical team told the McDonalds that Emma would look as much as possible like a normal girl after the operation. Nonetheless, on the eve of the surgery, Vicki remained in deep conflict—especially about the clitoroplasty, a procedure she feared would harm her daughter’s future sexual sensitivity. “This child,” she said quietly, “is perfect as she is. She was sent to us by God.”

If Emma had been born only a few years ago, Vicki might not have been so tormented. She might not have been told many details about Emma before the infant went into surgery. American medical protocols were established in the 1950s: Assign a sex, operate, and shield the family from the notion that their baby’s gender is in question. Typically, a medical team—made up of a surgeon, an endocrinologist, a geneticist, and more recently, a psychotherapist—reached a committee decision on sex assignment, then informed the parents that their child had a correctable deformity.

That approach was given credence by psychologist John Money of Johns Hopkins University. Money, maintained that gender was plastic until age 2. In 1972 he published a book called Man & Woman, Boy & Girl on the John/Joan case, which appeared to prove his theory. John, a male twin, lost his penis in a circumcision accident, and his sex was changed to female. Money claimed Joan grew up happily feminine. But in 1994, biologist Milton Diamond tracked down Joan and discovered that she had chosen a sex-change operation back to male in his early 20s. Gender, it seemed, was not so easily manipulated.

The John/Joan revelations dumped fuel on an ethical fire that got hot in 1993, when an adult intersexual named Cheryl Chase, now 43, founded the Intersex Society of North America, an organization now with 1,500 members. The group lobbies against unnecessary genital surgery on infants and maintains that current medical protocols are based on stereotypes: Maleness is equated with penis size, femaleness with fertility. Immediate genital surgery on intersexual infants, they say, sacrifices the sexual sensitivity of babies assigned female.

They also claim that medical secrecy intensifies the stigma it is intended to protect against. Therefore, the Intersex Society advocates a noninterventionist approach: No surgery unless medically necessary and full disclosure to parents and ultimately the child. An intersexual child, they say, could be raised with a regular gender identity—sex-stereotypical clothing, name, and hair—without altering the genitals. With therapy and a supportive family, an intersexual could make his or her own decision whether to choose cosmetic procedures—or not.

 



John Colapinto's award-winning Rolling Stone article, "The Story of John/Joan," describes the origins of and justification for intersex medical protocols. See www.infocirc.org/infocirc/rollston.htm.

The Web site of the Intersex Society of North America is a clearinghouse for information, contact numbers, and support: www.isna.org.


Emma is a true hermaphrodite. Her condition, called mixed gonadal dysgenesis, strikes roughly one in 100,000 babies. But there are more than 25 other intersexual diagnoses, altogether affecting one out of every 2,000 infants.

Although only a dozen doctors have contacted Chase and sided with the group, and treatment of intersexual infants remains essentially the same as it was 50 years ago, last year several journals—including Urology, Pediatrics, and the Journal of Clinical Ethics—published articles on the debate, examining ethical concerns and the lack of follow-up data on patients. The Journal of Clinical Ethics included articles written by adult intersexuals in its special issue on the subject.

“i was born and raised in the South, and you respect authority,” says Vicki. “A doctor is an authority figure. I’ve had to fight against just blindly saying, ‘OK, OK, OK.’” During the first confusing days after the diagnosis, Vicki and her mother immersed themselves in research, eventually contacting Chase through the Intersex Society’s Web site. At their first meeting with Emma’s doctors, Vicki suspected the worst. “I was like, ‘You’re not touching my baby!’” she recalls. But she found herself wavering. The doctors openly acknowledged the baby was intersexual. They discussed the debate about gender imprinting—the concern that Emma might feel male because hormonal exposure had already masculinized her brain. The surgeon, Dixon Walker, impressed Vicki as being open to new ideas: “He said, ‘There’s a group of people who believe that we’re doing the wrong thing. In 30 years we may find out they’re right, but for now, this is the best we know how.’”


‘A group of people believe we are doing he wrong thing. . . .Right now, it’s the best we know’


Walker said surgical procedures had improved, and Emma would have an easier life as a female. Current techniques couldn’t give her a working penis, and she wouldn’t require an operation to create a vagina until she was sexually active. Vicki was relieved, because she had read that the dilations required to keep such a vagina open were traumatic for children. Psychologist Suzanne Johnson warned the family that without cosmetic surgery Emma might suffer from gender confusion and reassured Vicki that she knew well-adjusted girls who had received such operations. Finally, the doctors suggested doing all the procedures—medical and cosmetic—at one time, thereby sparing Emma multiple surgeries.

Vicki scheduled the surgery for April, telling herself she could still cancel. Perhaps, she thought, Emma might have the best of both worlds: an operation to protect her from scorn, coupled with family honesty. Emma’s knowledge of her adoption might be beneficial: She would know she had been chosen despite her unusual body and would understand it was possible to be a mother without giving birth. Still, as the date of the surgery neared, Vicki’s conflict grew. She had spoken to a half-dozen adult intersexuals who had been operated on as children. Many were deeply unhappy with the results, and most wished they could have made their own decision about surgery. One intersexual she spoke to chose surgery as an adult and did not regret it—but even she had urethral scarring. Emma’s doctors had not put Vicki in contact with any of the content postoperative intersexuals they had told her about, saying their former patients were unwilling to talk or that they had lost track of them. Vicki wanted reassurance from at least one adult intersexual who was happy with his or her childhood surgery. She would never get it.

Early every morning Charles helps Emma explore the house, the backyard, and even the family cars. Like many intersexual children, Emma is small for her age. She is also precocious, curious, and fearless, qualities her parents like to attribute to her unusual chromosomes.

In early April, Vicki sat on the porch swing of her mother’s house, ticking off the procedures in Emma’s upcoming operation. First, the surgeon would remove the gonad in Emma’s abdomen and then her descended left testicle. Emma’s enlarged urinary hole would be made smaller and moved upward, leaving space for a future vagina. Finally, Walker would perform the clitoroplasty, an operation to cut down her phallus to the size of a typical clitoris.

The operations were difficult for Vicki to discuss. Chase, the Intersex Society founder, had sent her a 1990 medical training video of the clitoroplasty. Vicki wept all the way through it. She now knew that in the three-hour operation, Emma’s phallus would be split open so that doctors could remove the spongy tissue of the shaft. The tip, still attached to its blood supply and nerve endings, would be trimmed, a wedge of skin removed, and the sides pulled together. This structure would be sewn into place as a clitoris and be surrounded by a labia minora, made of foreskin, and a labia majora, made from Emma’s hair-bearing scrotal skin.


If one day Emma regrets the surgery, her family hopes she blames them, not herself


Only the clitoroplasty, Vicki emphasized, would be cosmetic. Emma’s testicle and gonad might have precancerous tissue and must be removed. The size and position of her urethral hole put her at risk for urinary infections. Were that procedure solely cosmetic, she added, she would not haven given consent. But Vicki recognized that the clitoroplasty was her decision—one which put her in the peculiar position of safeguarding her daughter’s future sex life: “The doctor said that the surgery preserves the blood supply and the nerves, so she will be able to have an orgasm.” Anita wondered whether, even if Emma’s responsiveness is reduced, she would be able to tell the difference. Wouldn’t it be more difficult to have a sensitive but “weird” set of genitals, which might make it too embarrassing to wear a bathing suit, let alone be naked with another person?

Still, the lack of follow-up data on sexual sensitivity tormented Vicki: “As parents, we’re often forced to make decisions for our children that are hard. And this is one of ’em, as far as I’m concerned.” If Emma has regrets, Vicki said, she’ll be able to blame her family instead of herself. But Vicki’s worst nightmare was that Emma might grow up and identify as male. In that case, it would be too late.

The day before the operation, Vicki’s extended family gathered for Chinese takeout. The mood was raucous: ongoing debates have rattled each family member’s assumptions about gender. “What makes me female anyway?” asked Anita. “I don’t feel like a woman every minute of the day.” Cecil, Vicki’s once-traditionalist father, talked about “third-gender identity” and blurted out, “My God, wouldn’t it be fantastic if Emma wound up being a lesbian!” Instead of seeing Emma’s condition as something to be fixed and overcome, the McDonalds have a positive interpretation: Emma is spiritually “whole,” they said, sent for a purpose.

In a few years, doctors may treat babies like Emma very differently. Last fall, the American Pediatric Assotiation convened its first official committee on changing intersex medical protocols.

 


Vicki’s biggest fear is that Emma will grow up and  identify as male


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