For decades, doctors in the US have performed surgeries on intersex infants and children to make their anatomy look more like that of more typical boys and girls. That practice has increasingly come under fire; most recently in a report released Tuesday from Human Rights Watch and InterACT, an intersex youth advocacy group.
The 160-page report describes the physical and psychological damage these surgeries can have on intersex people who haven't given consent for the procedures, and urges Congress to ban the practice. It comes after three former US surgeons general labeled the act as unjustified; the American Medical Association is also considering a proposal to discourage the surgeries until children can participate in decision-making, unless there's a medical emergency. Both the United Nations and the World Health Organization have condemned medically unnecessary sex normalizing surgeries performed without children's consent as human rights violations. Malta banned them in 2015.
According to the Intersex Society of North America, about 1 in 1,500 to 1 in 2,000 births are considered intersex. It's an umbrella term meaning that the person's internal genitalia, external genitalia, chromosomes, hormones, or physical appearance don't correspond to classically male or female characteristics, said Susan E. Stred, clinical professor of pediatrics at the State University of New York's Upstate Medical University, in a video interview accompanying the Human Rights Watch report.
Surgeries on intersex children were popularized in the 1960s, according to the report, when doctors believed the procedures would help children grow up to be "normal." But as Human Rights Watch researcher Kyle Knight told the Associated Press, "There is no evidence that surgery delivers on the promise of making that easier."
Joshua Safer, an associate professor of medicine at Boston University's School of Medicine told Human Rights Watch agrees. "It's common that the discussion will be about how successful those surgeries can be, how safe those surgeries can be, and how well they can work in helping the child fit in," Safer told HRW. "What they don't include still, for the most part, are discussion of the potential harms." Those harms can include scarring, nerve damage, infertility, incontinence, and loss of sexual sensation and function, not to mention the need to be on lifelong hormone replacement therapy, Knight said. And there's the possibility that parents choose surgery to assign their children as male or female but they grow up to identify as the opposite sex.
There are, however, two rare circumstances when surgery intersex newborns is considered necessary: "One is when the internal organs are on the outside of the body, as if they were were turned inside out; the other is to ensure that there's a place for urine to leave the body," Stred told Human Rights Watch. Anything else, Stred said, is "cosmetic surgery and not medically necessary."
Though the 21 healthcare practitioners HRW interviewed for the report said such cosmetic surgeries are becoming less common, and groups like AMA and American Academy of Pediatrics want parents to understand both the risks and benefits, some organizations are still advocating for the surgeries. One such group is the CARES Foundation, which advocates for children born with abnormal genitalia caused by a condition called congenital adrenal hyperplasia (CAH), and it's worried the report is an unwarranted attempt to limits options for parents and patients.
"Medical decisions are difficult enough for patients without having to contend with the moral and philosophical agendas of certain movements," the foundation said in a statement to the AP.
As what could be considered a middle-of-the-road option, some hospitals have formed specialized teams to develop individualized treatment plans for families with intersex children. The SOAR Clinic at Children's Hospital Colorado near Denver employs a team of urology, genetics, and psychology specialists, among others, to help parents make the difficult decision regarding intersex surgery.
Hearing other intersex people's stories can also offer support to parents and their intersex children—like that of Hanne Gaby Odiele, a Belgian model who shared in January that she's intersex. Odiele was born with Androgen Insensitivity Syndrome—in which a woman has XY chromosomes instead of an XX chromosome, along with undescended testes—and her parents followed a doctor's advice for her to have multiple surgeries in order to develop as a "normal" girl; but wishes they hadn't. "It became a trauma because of what they did," she told Vogue.
As these intersex surgeries are further examined and medical groups continue to determine their validity, it's important to keep the health and happiness of children at the forefront of the discussion. As Arlene Baratz, a Pittsburgh-based radiologist and mother of two daughters born with a rare chromosome condition, told the AP, "If there's a secret to raising healthy children, it is to accept and focus on what they are, instead of what they're not."
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