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Intersex conditions pose unique challenges for UNC, Duke doctors

intersex 1

When Georgiann Davis was 17, she underwent surgery to remove what doctors called precancerous ovaries. 

Years later, as an adult, Davis obtained her medical records. They revealed that what her doctors had removed were actually internal testicles. She said she was never told about her condition.

“Doctors lied to me, and they encouraged my parents to do the same,” she said.

Davis, who is now a sociology professor at the University of Nevada-Las Vegas, was born with a condition in which her body doesn't recognize or respond to testosterone. 

She has XY chromosomes, but without the influence of the male hormone, her body developed the external sex organs of someone who is biologically female.

The condition, called complete androgen insensitivity syndrome, is a type of intersex, an umbrella term for people with conditions causing ambiguous genitalia — internal and external sex organs that aren’t clearly defined male or female. 

Appearance can range from a misplaced urethral opening to a micropenis or a large, penis-like clitoris. 

Dr. Ali Calikoglu is an endocrinologist on a team that works with disorders of sexual development, or DSD, at UNC Hospitals. 

“(Having ambiguous genitalia) is less common than many other conditions, but on the other hand, it is more common than most people think,” he said.

Calikoglu estimated that some kind of DSD occurs in one out of every 400 or 500 infants. In his personal experience, he said he sees two to three cases a month. 

Depending on which intersex condition a patient has, Calikoglu said ambiguous genitalia can be a sign of something more serious, such as congenital adrenal hyperplasia, in which infants can be at risk of dehydration from not retaining necessary salts and water. 

“Some of these conditions that result in ambiguous genitalia may be life threatening, so we approach these patients in a very careful way,” he said. “We always describe a baby with ambiguous genitalia as a medical emergency.”

That description, however, has come under fire from intersex and LGBT activists like Davis, who say it can influence how parents decide to treat their intersex children — leading to what activists view as a long history of performing unnecessary surgeries and omitting parts of medical history. 

“We ask parents not to ignore, not to sort of put things under a rug or away in a box somewhere," said Echo Meyer, a psychologist who works with the DSD team at UNC. "So we ask them to sort of be very cognizant of that.” 

According to reporting by Azeen Ghorayshi for BuzzFeed News, surgeons at U.S. hospitals performed surgery on intersex minors at least 2,991 times in the year 2012. Of those patients, 1,759 were under the age of 5. 

Dr. Richard Sutherland, a surgeon on the disorders of sexual development team at UNC Hospitals, said the medical field has come a long way in how it addresses intersex conditions, particularly from the practices of the 1960s and ’70s. 

“(Back then,) when you were born, we were going to make a decision … You’re gonna have your surgery, and you’re gonna be a boy or a girl,” he said. “That continued, I would say, till somewhere around 1995.”

And even today, up to 25 percent of people with partial androgen insensitivity syndrome, along with two other intersex conditions, are dissatisfied with the sex they were raised as, according to a 2006 article from the journal of the American Academy of Pediatrics. 

Calikoglu said before the major shift in thought, the medical community in the U.S. was performing irreversible and relatively crude surgeries on children with intersex conditions.

“There was a very vocal group that … argued that a permanent decision about sex assignment, particularly from surgical perspective, should be deferred until the individual can make a decision,” he said.

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That group, the Intersex Society of North America, was founded in 1993 and was a vehement opponent of unnecessary intersex surgeries for more than a decade. Calikoglu said the group influenced how the field approaches intersex patients. 

Alice Dreger, former chairperson of ISNA’s board, said despite 20 years of advocacy, progress in the medical community has been frustratingly slow. 

“It's really time for (doctors) to answer the question: Why should parents have a right to cut kids' genitals?” she said. “Children have a right not to have their genitals cut if there's no serious, present medical problem.”

Dreger said she feels the decision to perform surgery should be held off until intersex children can decide for themselves — a belief that's becoming more common in today's medical professionals.

Sutherland said nowadays, it’s the rare child that undergoes surgery. And even then, he said the ideal intervention would be both supportive and reversible.

He sees one or two ambiguous genitalia cases per month. Since entering the field in 1989, he said he's performed surgery on children with ambiguous genitalia only five times. He said his co-worker has performed a similar number. 

Dr. Jonathan Routh from Duke Hospitals said eight percent of children born with these conditions are operated on before they leave the hospital — a statistic he called shocking and disheartening. 

Routh works at a center focusing on care for intersex and transgender youth, which opened July 2015. He said the team takes an interdisciplinary approach, involving an endocrinologist, surgeon, psychologist and social worker, among others. UNC has a similar strategy. 

Routh said as far as he’s concerned, this integrated approach is the only way doctors should be caring for children with DSD. The interdisciplinary team steps in for its patients in multiple areas, even outside the hospital.

On one occasion, he said he refused and delayed a surgery that parents wanted for their infant’s DSD condition.

Routh said the center has started reaching out to mental health providers and LGBT centers. They also recently submitted a letter to the Charlotte Observer condemning how House Bill 2 affects the lives of their patients. 

“Left to our own devices, we’d much rather be shrinking wallflowers and not get involved in the political spectrum, but our patients need that,” he said. “That’s part of the team as well.”

Dreger said she had hoped North Carolina doctors would speak up against what she called a coercive and hateful law. She said the medical providers ought to stand up for the unique situations of intersex people like Davis.

“I've been using the women's restroom for my entire life. So, I know many people who have peed next to me,” Davis said. “They actually peed next to a girl who had balls — and nothing happened to them.”

Despite the recent legislation, Sutherland said the medical community is making progress toward accommodating differences in sex and gender.

"We’re much more accepting, as we should be, of the unknowns in medicine and let the individual choose rather than telling them who they are."