Are hasty operations on intersex children becoming a thing of the past?

Cory is a shy, artistic seven-year-old boy who loves drawing, music and video games. He lights up when he talks to his parents, Carol and John, about his big brother and the video game Fortnite. Although Cory’s life is mundane and ordinary in many ways, however, his journey hasn’t exactly been typical.

When Cory was in utero, doctors expected him to be a girl. When he was delivered, the medical staff in the room looked stunned and went silent. Cory was born with a phallus, which is medically atypical for individuals with two X chromosomes.

“He had what the medical establishment considers ‘ambiguous’ genitalia,” Carol says. (Some names have been changed.) “Everyone but me realized that this was an intersex child. And I think the fear in the room was that I would be disappointed.”

But while doctors and nurses appeared puzzled, Carol wasn’t nearly as concerned about her child’s sex.

“I didn’t really care,” she says. “I told them, ‘I’ve been waiting a long time to meet this child, so just give me the baby. The baby is breathing and stable. Can I just have my kid?’ And the mood became a lot lighter in the room once they realized that I would never reject my child.”

Doctors pressured Carol and John to allow them to perform cosmetic surgeries on Cory in order to remove his phallus and “normalize” his genitalia.

For years, intersex activists have pushed for bans on surgeries on intersex children. In January this year, California lawmakers rejected what would have been a first-of-its-kind ban on medically unnecessary procedures and treatments performed on infants born with atypical genitalia. For many intersex kids and their families, this legislative defeat is a signal of the work that remains to be done to protect the autonomy of intersex individuals.

Parents like Carol argue that irreversible physical and psychological harm can result from these surgeries.

“I thought that was a terrible idea,” she says. “If you remove something, it’s gone forever. Who knows if this person is going to grow up to want to have a vagina or to have penetrative sex? And whose business is it to make these decisions except the person?”

Seven years later, Carol and John are relieved that they did not opt for surgery because, although he was given a female name at birth, Cory now identifies as a boy.

“Thank God we didn’t make that mistake,” Carol says.

Cory has begun seeing a gender clinician as he embarks upon his gender transition to become his fully realized self, as a boy. Through the years, his parents have maintained an open dialogue with Cory, adamant in their shared belief that he should take the lead in telling the world about his gender identity.

Being intersex – an umbrella term for unique variations in reproductive or sex anatomy – is more common than one might think. The percentage of people born on the intersex spectrum is roughly the same percentage as people who are born as twins – about 1.7% of people, according to a Human Rights Watch report. And about one in 2,000 babies is born with genitalia different enough from what is considered standard that doctors might recommend surgery. The HRW report provides a searing analysis of the frequency and potentially devastating impact of forced genital surgeries performed on intersex kids at birth.

Many in the media have referred to such surgeries as “non-consensual”, but that’s not quite accurate. “Minors legally can’t consent, but parents are consenting to these surgeries,” says Hans Lindahl, the communications director at InterAct, an advocacy group for intersex youth. “So parental consent right now is ‘consent’. We want the individual to lead such decisions and for children to be able to understand what’s happening to their bodies.”

According to Lindahl, when doctors don’t assign a gender to intersex children, and instead allow them to explore gender on their own terms, intersex kids are able to thrive and forge their own identities. But when intersex kids are subjected to forced surgeries, the results can be devastating, sometimes leading to nerve damage, incontinence, scarring and diminished sexual function. Additionally, there is a chance that doctors could incorrectly assign a child’s gender, as there is no way to know how the child will identify when they mature. Doing so can cause tremendous suffering and psychological distress for the intersex individual.

The entire intersex healthcare system assumes that intersex individuals want their bodies to be surgically altered; but while some intersex people desire medical intervention, countless others feel no need for “correction” because they don’t view being intersex as a malignancy or deformity, but simply as a variation.

“When people hear that someone is intersex and they know what intersex means, they automatically assume they’ve been through trauma,” says Sarah, a mom to an intersex child, Rae, who uses they/them pronouns. (Names have been changed.)

“We were definitely advised that surgery was the best option and that Rae has testes in their lower abdomen,” Sarah says. “[The doctors] wanted to do the surgeries necessary to solidify a female gender assignment.”

Sarah and Rob, Rae’s father, resisted the advice of their doctors. They believe that we need to create more space for parents to feel relaxed about raising their intersex kids, instead of immediately pursuing life-altering options that a minor is in no position to agree to. They also wanted to make sure that Rae could carve out their own gender path. Rae previously identified as male, but now identifies as non-binary, experimenting with fluid and evolving modes of dress and presentation. Rae has also found community and friendship among other queer young people.

Rae “is the happiest child,” Sarah says. “So much of what we read about intersex people focuses on suffering. I’ve been asked if I think [Rae] will ever have a phase where they wish they weren’t intersex. The answer is no. They love their uniqueness.”

When asked if they had any advice for other intersex kids coming to terms with their gender, Rae simply responded: “Be yourself no matter what.”

Although Rae and Cory learned of their intersex variations early on, many intersex people don’t until their teenage years or adulthood.

Fatima Mahmud learned that she was intersex at 16 years old. She was about to embark on a field trip overseas and her parents decided to tell her in case a medical situation presented itself while she was outside their care.

“They told me I had a growth in my abdomen that was removed when I was a child,” Mahmud, now 22, says. “I later found out they were referring to my undescended testes. I remember crying to my friend because my entire vision of the future had just changed.”

Gradually, Mahmud learned that she was born with XY chromosomes, and the pills she was given every day were hormone replacement medications that she would need for the rest of her life. For Mahmud, learning that she was intersex had no bearing on her gender identity.

“I’ve always known I was a girl,” Mahmud says. “People automatically think that intersex equals some sort of gender-neutral identity, which isn’t always the case.”

Through childhood and into young adulthood, Mahmud has had to navigate the same experiences as any other young person – like dating and friendships.

“I started dating a guy in high school and we’ve been together for five years,” she says. “He was learning about me being intersex at the same time I was. I’m really lucky that my partner has been supportive of me.”

She also found support by connecting with her intersex peers at InterAct.

“The first time I met [another] intersex person was completely by chance,” she says. “I was in class and we had to do a project where we created a mural about ourselves. One of my classmates presented her mural about being intersex. She introduced me to an advocacy group, and without having met her, I would never have the confidence in my identity that I now have.”

Mahmud explains how vital it has been for her to see visible examples of intersex folks living to their fullest potential and pursuing their aspirations.

“After making intersex friends, I started to really understand what I deserve in life: happiness.”