Parents of children whose gender is not clear at birth are caught in an increasingly divisive battle over the medical risks and ethical fallout of opting for surgery to transform an intersex baby into a boy or a girl.
With an estimated one in 2,000 babies born between genders, parents must decide whether to operate or not, with the medical establishment split and intersex campaigners calling surgery a violation of human rights.
Research suggests intersex adults risk psychological damage following rounds of early operations, yet advocates say there is scant evidence that doing nothing would be any better.
As campaigners marked Intersex Awareness Day on Friday, calls are growing in the United States and beyond to outlaw gender-alignment surgery on intersex children unless it is medically needed.
Currently, intersex babies can face operations to change the appearance as well as function of their genitalia.
This year, Olga Khazova, a member of the United Nations Committee on the Rights of the Child, voiced concern about “the still existing practice of non-consensual genital mutilation” – in remarks confirmed by the Office of the High Commissioner.
Last year, the Council of Europe, which oversees human rights and the rule of law, called for “medically unnecessary, sex-normalising surgery” on intersex babies to be banned.
Campaigners are far blunter.
“This is the biggest ethical disaster in modern medicine in the 2000s,” Suegee Tamar-Mattis, a California-based physician and intersex activist, told the Thomson Reuters Foundation.
DON’T TALK ABOUT IT
Intersex children are surprisingly common, with estimates suggesting 1.7 percent of births are of indeterminate gender.
Doctors have identified more than 30 different types of DSD – or differences of sex development – yet there are few intersex figures in the public domain who are known and speak out.
“The medical world tells us that we should not talk to anyone about it,” fashion model Hanne Gaby Odiele told the Observer newspaper last year. “Always, I was told to hide.”
While many babies are not necessarily identified as intersex at birth, for parents whose children are obviously so, with genitalia that looks neither female or male, surgery is almost always offered to make their sex organs conform.
Intersex genitalia can be surgically changed for an array of reasons: to change appearance, to help urination or menstruation, improve fertility and sexual function, or ward off potential medical complications.
This is why trust in the medical profession advising on a procedure is so critical, said Barbara Chubak, assistant professor of urology at the Icahn School of Medicine at Mount Sinai hospital in New York.
“We are not informing people as optimally as we might.”
Katharine Dalke, a psychiatrist at Pennsylvania State University medical school, questioned the accepted medical wisdom that surgery was routinely the best route.
There is a growing consensus that the way we’ve been doing this is problematic and the current model of care is not appropriate,” Dalke said.
The American Medical Association, which represents physicians and students, does not have a policy or offer guidance for practitioners but says the issue is under review.
For clinical psychologist David Sandberg, professor of paediatrics at the University of Michigan’s CS MOTT Children’s Hospital, the issue was far from clear cut.
“Activists will say (these surgeries) are medically unnecessary,” he said. “I would say these are elective surgeries – not urgent – but also not, by and large, purely cosmetic as they are altering function.”
A spokeswoman for the American Urological Association said surgery was performed only after “a comprehensive evaluation” that took into account all available evidence for the patient’s best interests.
“We truly care about getting it right, which is why we are not ‘for’ or ‘against’ early surgery,” she said. “It is not logical to impose mandatory restrictions in an area as complicated as this, because it could affect individuals who require timely, health-improving surgical intervention.”
Most countries still recommend “corrective surgery”.
Malta is one of the few nations to outlaw surgery for intersex children. And in China, intersex children are often assigned as male as men are more valued in society.
Yet while activists and advocacy groups might criticise early surgery, for parents it can offer the only course with a track record, said Chubak. There are decades of material on the potential outcomes of opting to operate, but “precious little” when it comes to simply leaving the child to grow up, she said.
A PRICE TOO HIGH
For many, the price of surgery is simply too high.
Intersex children reaching adulthood report incidences of post-traumatic stress disorder (PTSD), brought on by rounds of operations at an early age. A 2016 Australian study suggested almost half of the 176 respondents had thought about self-harm.
“If they had never done surgery, there would have been a lot of physical and emotional benefits,” said Kimberly Zieselman, head of InterACT, an intersex advocacy group in Massachusetts.
“I was diagnosed with PTSD in my late 20s as a result of repeated examinations.”
Canadian couple Eric and Stephani Lohman rejected surgery when their fourth child, Rosie, was born intersex in 2012 at a hospital in London, Ontario. Eric said he still feels scarred by the experience – not of Rosie’s birth or the fact she was intersex, but by the reaction from hospital staff.
“Up until her delivery, everything was fairly normal and went according to plan,” Lohman said in a telephone interview from his home in Milwaukee.
Then the room fell silent.
“Everything seemed to be happening in slow motion.”
“The nurse said there was an irregularity,” Lohman said. “I knew when I looked around that room that when Rosie was born, that she was intersex.
“Stephani was the only who didn’t understand and didn’t recognise the dread and fear that was in the room.”
The hospital quickly assembled a 35-person strong team of the surgeon backed by endocrinologists, gynaecologists, paediatricians and even social workers.
“It was about the most intimidating room I’ve ever walked into,” Lohman said.
The surgeon recommended operating at six months: “A vaginal opening and to reduce the size of her clitoris.”
Two procedures in total. Yet Lohman and his wife, a nurse and cell biologist, were not convinced.
“(The surgeon) felt his job to convince us to do the surgery,” Lohman said. “He had photos of surgery performed on children, showing images of bloody, swollen, recently surgeried vaginas.”
The couple rejected surgery and Lohman feels other parents should not have to endure the same pressure to operate.
“(We need to raise) awareness and acceptance of intersex and different identities in our culture, and gain better acceptance of the diversity of our population for those people with bodies like Rosie,” Lohman said.
“This is the hill I’m prepared to die on.”