Should We 'Fix' Intersex Children?

Standard medical practice is often to operate to "normalize" genitals, but some families are fighting back.
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When Mark and Pam Crawford took their family to Great Wolf Lodge, a water adventure park, for a week’s vacation, their seven-year-old made a request.

“Since we don’t know anybody,” S asked her parents, “can I be a boy?”

The Crawfords, who adopted S at the age of two, had seen signs for years that she did not think of herself as female.

S didn’t want braided hair; S wanted a haircut “like dad’s.” At Halloween, S wanted to be a superhero, but not Wonder Woman. S wanted to use the men’s bathroom and liked to be referred to as a boy. S already tended to be perceived as a boy by strangers, after requesting a buzz cut about a month before the family’s vacation.

The Department of Social Services had told the Crawfords their child was born with an intersex condition, meaning the baby’s gender was unclear. S's genitals had been surgically reconstructed to look more female.

So at Great Wolf Lodge, S’s parents thought, “Okay.” Maybe, the resort, where no one knew S, would be a safe place to try out being a boy.

The week went well. S picked out a new, male name “M.” When the family arrived back home in South Carolina, things snowballed. M kept up his requests to be a boy, first at gymnastics class, then at the family’s Jewish temple and at school. His parents helped as M told the world step-by-step what he had known all along.

In retrospect, Mark Crawford said, “He never gave us any indication that he was not a boy.”

* * *

M was born with genitals that were not clearly male or female. Also known as disorders of sex development (DSDs), the best guess by researchers is that intersex conditions affect one in 2,000 children.

The response by doctors is often to carry out largely unregulated and controversial surgeries that aim to make an infant’s genitals and reproductive organs more normal but can often have unintended consequences, according to intersex adults, advocates and some doctors.

A long and gut-wrenching list of damaging side effects—painful scarring, reduced sexual sensitivity, torn genital tissue, removal of natural hormones and possible sterilization—combined with the chance of assigning children a gender they don’t feel comfortable with has left many calling for the surgeries to be heavily restricted.

The Crawfords are bringing a landmark lawsuit on behalf of M against the hospitals and doctors who treated M, and the South Carolina Department of Social Services, which allowed the operation when M was in foster care.

A state lawsuit against the hospitals and the South Carolina Department of Social Services alleges medical malpractice and negligence, while a federal suit accuses the individual doctors and Social Services employees of violating M’s due-process rights under the 14th Amendment, which says that no state shall "deprive any person of life, liberty, or property without due process of law."

Part of what spurred the legal action, which is supported by the intersex civil rights group Advocates for Informed Choice and the Southern Poverty Law Center, is to prevent the surgery from happening to more children, the Crawfords say. But advocates have been pushing back on these surgeries since more than a decade ago.

During the 1990s, intersex adults who had received surgery as infants came forward speaking about their sense of mutilation. At the same time, an experiment from Johns Hopkins University that claimed to prove young children could safely be assigned any gender with surgical “reinforcement” was revealed to be a failure. The study had been initiated in 1967 by psychologist John Money, who claimed to have successfully given a boy female anatomy and had the child live as a girl. The child, whose penis was burnt off in a circumcision accident, was castrated and operated on to look female at the age of 22 months—eight months before the age at which Money claimed gender became fixed.

Until the 1950s, intersex children had largely been left alone, but Money’s experiment provided support for early surgical intervention. However, one of Money’s rival researchers tracked down his study’s subject and, in 1997, showed that the child had never been happy as a girl and had converted back to living as man, sending shockwaves through the medical profession. Nevertheless, the surgeries continue.

* * *

On April 18, 2006, when M was 16 months old, Dr. Ian Aaronson operated on him at the Medical University of South Carolina (MUSC). He reduced M’s penis to look more like a clitoris, cut up his scrotum to form labia, and removed his internal testicle tissue. Two other specialists also treated M: Dr. Yaw Appiagyei-Dankah, who worked at MUSC, and Dr. James Amrhein from Greenville Hospital.

In a letter to M’s pediatrician, Dr. Amrhein wrote that initially, M’s condition was “confusing.” He had been identified as a boy at birth because of his “rather large” penis. Routine blood tests showed his testosterone levels were extremely elevated. However, he had a small vaginal opening beneath his penis and both ovarian and testicular tissue. “Surgical correction” was necessary, the doctors noted in medical records. It took the trio about four months to decide which gender to assign M.

All three doctors and the Department of Social Services declined to comment because of the pending court cases.

“I was … able to reassure both her social worker and her [foster] mother that as far as the external genitalia are concerned, this can be corrected surgically so that the baby looks either a normal boy or girl,” Aaronson wrote to Amrhein on January 18, 2006 according to the court complaint.

Fertility is one of the factors doctors take into account when considering which gender to assign a child. Some medical literature describes children with M’s condition, ovotestiuclar DSD, as having a higher potential for fertility by assigning them as girls and keeping their ovarian tissue.

Whether or not M’s female or male reproductive organs were fertile is likely to be a contested point in the case. The legal complaint claims that the removal of M’s testicular tissue removed M’s potential for male reproductive function but the defendants’ response denies this.

By late February 2006, Aaronson seemed to be coming to a decision based on the fact that S’s foster parents were raising the toddler as a girl and the child’s vagina seemed fully formed.

“My bias at the moment is towards female, although I have raised the possibility because of the substantial virilization of the external genitalia that there may have been sufficient testosterone imprinting to question ultimate gender identity,” he wrote in February according to court records.

The doctors decided to do feminizing surgery in April.

Aaronson was aware of the controversy surrounding the procedure. “Carrying out a feminizing genitoplasty on an infant who might eventually identify herself as a boy would be catastrophic,” he wrote in a medical journal in 2001. He acknowledged the arguments that surgery on infants should be postponed, but concluded, “most parents are disturbed by the appearance of the genitalia and request that something be done as soon as possible so that their baby ‘looks normal.’”

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​Charlotte Greenfield

Charlotte Greenfield is a writer based in New York.

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