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Auteur: Nathalie Angier
Publicatiedatum: 13 mei 1997
Publicatiemedium: The New York Times
Type publicatiemedium: Krant
Link naar het medium: The New York Times

Dit artikel over wel of niet chirurgisch ingrijpen bij kinderen die geboren zijn met niet-eenduidige uitwendige geslachtsorganen, is op 13 mei 1997 in The New York Times gepubliceerd.

For those who think that genital cutting and the excision of a girl’s clitoris are tribal practices largely restricted to the countries of sub-Saharan Africa, consider the case of Martha Coventry, a lanky, genial, springy-haired Minnesotan of 45.

While pregnant with her, Ms. Coventry’s mother took progesterone in an effort to prevent miscarriage. Ms. Coventry was born healthy in every way, but as a result of the hormone exposure, her clitoris measured just over half an inch long, two or three times the average size. It posed no medical risk, but it looked, well, boyish.

“My parents were worried about how that would affect me growing up,” said Ms. Coventry, “so I had a clitoridectomy when I was 6. They just snipped it right off.” Ms. Coventry was told only that she had had “something cut off between her legs,” and when, at the age of 11, she pressed her father for details, he warned, “Don’t be so self-examining.”

Mortified and overwhelmed, Ms. Coventry did not ask another question for the next three decades, and she spent years of her youth making sure nobody ventured below her belt. “I was afraid they’d be horrified by what they found,” she said, comparing her genitals to the aftermath of “a combine accident.”

Last week, Ms. Coventry and a handful of others who had clitoral surgery in childhood began lobbying Congress to stop that combine by extending the recent federal ban on genital cutting. They want it to include the much less familiar but perhaps no less contentious custom in which pediatric surgeons reduce or remove infant clitorises deemed abnormally large. Such surgery is surprisingly common in this country, affecting perhaps 2,000 babies a year.

The new legal effort throws into the limelight a dispute that has been escalating over the last few months between the doctors who treat cases of so-called ambiguous genitalia, usually through surgery, and the people who feel they were physically and emotionally maimed as children and wish to change how babies like them are treated in the future.

The debate raises difficult questions about who has the right to decide what ranks as esthetically acceptable genitalia, whose interests are being served by surgical intervention and whether one’s sexual identity is so entwined with the appearance of one’s genitals that it is worth subjecting infants to a major operation to assure visual concordance between one and the other.

The procedure is performed on infants who, for a wide variety of hormonal and genetic reasons, are born with ambiguous genitals, ranging in appearance from a simply protruding clitoris to a more complex configuration not immediately identifiable as male or female. By current practice, doctors designate about 90 percent of babies with ambiguous genitalia — also called intersexuality — as girls. They then try to fashion the genitals into a patently female form, surgery that usually requires clitoral reduction.

Those who oppose the practice argue that clitoral reduction serves no purpose beyond a cosmetic one, and that it can leave its subjects with scarred, atrophied and numbed genitals, incapable of feeling pleasure and sometimes giving pain. In their view, the surgery is performed, not for the good of the child, but for the peace of mind of doctors and parents, who see any deviation from a putative genital norm as monstrous.

“Africans have their cultural reasons for trimming girls’ clitorises, and we have our cultural reasons for trimming girls’ clitorises,” said Cheryl Chase, founder of the San Francisco-based support group, the Intersex Society of North America, that organized last week’s lobbying efforts. “It’s a lot easier to see what’s irrational in another culture than it is to see it in our own.”

Ms. Chase, 40, an engineering liaison between Asian and American companies, had her enlarged clitoris amputated in early childhood, as part of the treatment for her intersexual condition. She says she has no clitoral sensation, has never had an orgasm and is still bitter about the loss.

The risks of surgery go beyond a loss of physical sensation, said Ms. Coventry, an editor and writer. “I’d be considered one of the success stories,” she said. “I still have clitoral sensation, and I’m orgasmic.” Nonetheless, she said, “it’s taken me my whole life to come to terms with my body and not to feel such terrible shame.”

She, Ms. Chase and other critics of the procedure propose that clitoral and other types of genital reconstruction be postponed until patients are old enough to decide for themselves whether they are willing to risk surgical complications for the sake of feminizing their pelvises.

Most pediatric surgeons, urologists and endocrinologists who treat children with ambiguous genitals reject the critics’ arguments as the unreasonable and simplistic demands of a fringe minority. They argue that the cases they confront are serious birth defects, not interesting variations on a theme, and they regard their interventions as essential for the emotional well-being of parents and their children.

They say they work carefully to evaluate the chromosomal and hormonal details of each case, to assure that when they do feminizing surgery, the baby has a good chance of growing up into a well-adjusted girl.

To give birth to a child with ambiguous genitals is a harrowing experience for parents, they say, and the sooner the child is made to look as normal as possible, the sooner the family can put the crisis behind it.

“I don’t think it’s an option for nothing to be done,” said Dr. Anthony A. Caldamone, head of pediatric urology at Hasbro Children’s Hospital in Providence, R.I. “I don’t think parents can be told, this is a normal girl, and then have to be faced with what looks like an enlarged clitoris, or a penis, every time they change the diaper. We try to normalize the genitals to the gender to reduce psychosocial and functional problems later in life.”

Moreover, doctors insist that their surgical techniques are far more refined today than they were when critics of the procedure were treated decades earlier. They say that now they can reduce tissue mass while leaving sexual sensitivity intact. “The blood supply and nerves are preserved, which provides, we think, most of the sexual sensation to the clitoris itself,” Dr. Caldamone said.

Just how good any of the innovations are remains under dispute. In an article in the February issue of Urology Times, Dr. David Thomas, a pediatric urologist at St. James University in Leeds, England, reviewed the cases of a dozen girls, ages 11 to 15, who had undergone clitoral reduction surgery in infancy. Five showed signs of clitoral atrophy, he said, with the worst of the resected genitals looking “withered and obviously nonfunctional.”

But in the article, Dr. Antoine Khoury of the Hospital for Sick Children in Toronto countered that the cases predated the very latest surgical advances, and he insisted that waiting too long for surgery could pose risks of its own.

Researchers at Johns Hopkins University in Baltimore have tried to get objective measures of the sensitivity of postoperative clitoral tissue by seeing whether the nerve bundles left behind still conduct electrical impulses detectable with an electromyograph. In all six cases they looked at, they found that the nerves retained their conductivity. What that measurement means, though, is unknown. One adult intersexual whose postoperative clitoris showed positive electromyograph response said she had no clitoral sensitivity and was inorgasmic.

“The truth is, genital surgery is being done, but we don’t know what the outcome of it is, sexually or otherwise,” said Dr. Justine M. Schober, a pediatric urologist at Hamot Medical Center in Erie, Pa. “We don’t have any long-term studies.”

The debate over the treatment of ambiguous genitals has turned so acrimonious that a number of surgeons and doctors refused to speak about the issue. And while most specialists defend current treatment standards, there has lately been dissension in the ranks.

Schober said that in the course of doing research with Dr. Christopher Woodhouse for a book chapter about the long-term outcomes of feminizing surgery for intersexual conditions, she has come to believe that early surgery may be wrong. “By the Hippocratic oath, you should first do no harm,” she said. “And we can’t say that this surgery does no harm.” Not only is an enlarged clitoris not necessarily a bad thing, she added, but it is possible that having one enhances a person’s sexual responsiveness.

A few surgeons now try to convince distressed parents that odd-looking genitals may be best left alone. One surgeon told Ms. Coventry about a recent experience in which a mother brought in her 5-year-old daughter and asked him to remove the girl’s clitoris, which he said was about the length of the top of his pinkie. The surgeon advised against it, telling the mother that he worked with African women who had been genitally maimed, as well as with American intersexuals, and that he thought her daughter might regret the surgery later.

A couple of weeks later, the surgeon was called into the operating room to help with an emergency. On the table was the little girl with the large clitoris, hemorrhaging uncontrollably. The mother had taken her to another surgeon for the clitoridectomy, and that doctor agreed to do it, although he had never done one before. The senior surgeon stepped in to salvage the botched operation, and because the surgery had just begun, managed to keep her entire clitoris intact.

More often, though, surgeons and critics of the procedure have been at loggerheads, which is why Ms. Chase said they decided to take their case to Congress. They spent a day visiting the congressional offices of senators and representatives from their home states of California, Maryland, Oregon and Minnesota, explaining the basics of ambiguous genitalia and telling their personal stories.

Their goal is to have one word inserted into a provision of the ban on female genital mutilation. In a section that says genital surgery is not in violation of the prohibition if it is “necessary to the health of the person on whom it is performed,” they would like to modify “health” with “physical.”

“That would break the pediatricians’ argument that they do this to prevent psychological and mental trauma for the child,” Ms. Chase said.

“We don’t expect this to be finished up in six months,” Ms. Chase said. “But we’re not going to go away, and we have more passion than they do.”

Klik hier om het artikel op de site van The New York Times te bekijken.

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