What it means to be intersex and why controversial surgeries are still allowed

When Sean Saifa Wall was 13, a doctor recommended to his mother that Wall's male-typical genitals be removed and that he begin feminizing hormone therapy.

He says his late mother agreed to the surgery and treatment, but Wall adds that his mother picked the wrong gender for him.

"Receiving my medical records and really learning about what happened to me without my thorough informed consent, I think, made me really angry," Wall, who is now 44, told ABC News.

Wall was born intersex, which encompasses a group of people with genitals, chromosomes, hormones or reproductive organs that are neither clearly male nor female at birth.

Born with partial androgen insensitivity syndrome, or AIS, he had atypical reproductive organs and, like many intersex people, had surgery performed to assign him to one gender over the other without, he says, his consent.

Up to 1.7% of people are born with intersex traits, according to the Office of the United Nations High Commissioner for Human Rights.

Though conservative legislators across the country have introduced or passed bans that limit access to gender-affirming medical care for transgender youth, the bills have explicitly allowed an exception for surgery on intersex minors.

This means surgeries can be performed on babies or young children, but only if they have a medically verifiable condition that doesn't fit into the typical definitions of "male" or "female."

Surgeries on intersex children have been condemned by the United Nations, the Human Rights Campaign and intersex activists around the world. However, in the U.S., the federal government has left it up to individual states to create their own laws on gender-affirming care.

Some doctors have defended these surgeries as being an option that should be made available to children and patients. But many intersex patients and advocates say these procedures are medically risky.

"This is not protecting children at all," said Wall. "We have to acknowledge that what we have done to intersex people, what we have allowed to happen is unjust. And it's a flagrant violation of bodily autonomy and bodily integrity."

Wall believes transgender people and intersex youth are being used as cannon fodder in the fight to maintain the gender binary and reinforce heterosexuality as the societal norm.

"Biological sex is not neat at all, right?" he added.

The medical-ethical dilemma

Since the mid-1900s, genital reconstructive surgery has often been seen as a "fix" for intersex conditions to be more cosmetically pleasing and to fit into one gender, experts told ABC News.

This can include removing internal testes and gonad tissue, reducing the clitoris or creating a vaginal canal.

"The history of surgery to 'fix' intersex children and to normalize their sex organs is a very contentious one," Dr. Ilene Wong, a urologist at MidLantic Urology in Pennsylvania, told ABC News. "And most devastatingly is when kids are assigned or switch to a gender that [parents] think is conforming to their chromosomes, when, in fact, later on they have a vastly different gender identity."

A 2022 study comparing the views specialized physicians have regarding intersex child surgery with the experiences of intersex adults found, "physicians justify surgery on the grounds that they are defending the right of the child to have access to treatments and live as normal a life as possible."

But Wong said these surgeries can also come with complications, including possibly removing the ability of sexual function and reproductive potential. There is also the risk of pain, nerve damage and scarring, according to research studies.

Wong said a surgery she performed on an intersex teenage patient was her first understanding of the risks these surgeries can carry.

During her first year of residency, Wong said she treated a patient who identified as female and externally looked female but never got her period because, as it turned out, she had internal testes instead of ovaries and a uterus.

The teenager had given her consent to the surgery, but Wong said the patient had not been adequately informed about the risks of her surgery.

"We basically made this 17-year-old girl menopausal and so I had to talk to her about needing hormones and you could tell there's this blank expression on her face," Wong said. "She had no idea that this was even a possibility."

She continued, "So it was representative of the failure of the consent process, and how challenging it is for even for adults or proto-adults or adolescents to really understand the full outcomes, the full potential complications of any surgery."

Not all doctors are against intersex surgeries, however. When California lawmakers introduced a bill in 2019 calling for a ban on genital surgeries on infants that are not medically necessary, the Societies For Pediatric Urology spoke out against the bill.

"The medical community is not advocating for or against the surgical option," Dr. Lane Palmer, then-president of the group, said in a statement. at the time. "However, making only one option available and withholding others is not in the best interest of the patient, especially in complex conditions."

The statement continued, "The decision of what is 'medically necessary' is different for each patient. Proposals of a blanket ban on surgery would not only threaten the care of children with intersex conditions by denying access to surgery by erroneously deeming it 'unnecessary,' but it would even deny surgery to infants and children without intersex conditions who would be placed inadvertently under an overarching umbrella of legislative proposals. This latter group constitutes the vast majority of patients who would be affected by such bills."

Intersex surgery exceptions

As anti-transgender legislation has swept the country -- with lawmakers in many states preventing minors from undergoing gender-affirming care -- carve-outs have been allowed for surgeries on intersex children to continue.

Dr. Arlene Baratz, a Pennsylvania-based physician and medical and research coordinator for InterConnect Support Group for intersex people, said she finds the exception "interesting" considering that most transgender children do not undergo surgery until they are in their late teens and don't undergo genital surgery until they are age 18 or older.

They also are often required to undergo a psychological evaluation and have to live in the gender they identify with before surgery can be performed.

"The opposite is actually true for intersex children, and they [often] undergo surgery when they're infants. Again, they're not old enough to speak, some of them aren't old enough to walk," Baratz, the mother of two intersex children, told ABC News. "They know nothing about themselves, we know nothing about them, who they are, what they will like, how they are experiencing their gender."

She continued, "And so, I think that in order not to make mistakes with this kind of surgery, it should be available to people who want it and it should be available to people who can understand the consequences of it and that it should wait until they're old enough to be able to decide for themselves."

ABC News reached out to Do No Harm, a medical conservative organization against transgender health care for minors that helps draft legislation for lawmakers. ABC News also reached out to several lawmakers across several states.

Lawmakers declined or didn't respond to the request for an interview, as did Do No Harm, which instead sent the statement: "The model legislation was drafted based on scientific evidence and expertise from multiple areas, including pediatrics and pediatric endocrinology."

The group has said in previous interviews it is opposed to gender-affirming care in part because it ignores "informed consent" from transgender youth, despite calling for surgery exceptions for intersex people with no age or informed consent requirements.

Parents joining the fight against intersex surgeries

Some parents of intersex children say they felt pressured by their doctors to do the medically unnecessary surgeries to make their children "normal."

"They wanted to do surgery to solidify a female gender and I really pushed back," said Kristina Turner, the mother of an intersex teenager.

Eric and Stephani Lohman, who wrote the book "Raising Rosie" about their refusal to give their child surgery, were told their child "had what they called ambiguous genitalia and we should do a surgery before like, as early as possible, before his first birthday, because then he would never know," Stephani said.

"Certainly, there was an implied secrecy and shame," she added.

The Lohmans wanted their children to feel comfortable talking to them about gender and sex.

"That created an atmosphere that when [their child] was about 6 or 7, he started saying, 'I really feel like a boy and I want to get this boy's haircut, and I want to do all these things that are like what our society typically assigns to male gender,'" Eric said.

Some parents of intersex children criticize legislation that restricts gender-affirming care but includes exceptions for intersex people.

"Trans people are being told, 'You can't possibly know anything about your body because you're way too young'...And then for intersex people, it's the opposite. The choice of your gender is so important that you can't possibly wait until you're old enough to understand," Stephani said.

Turner said their child's intersex identity is not causing the most stress; rather, it's the legislation impacting transgender and intersex youth.

"Nothing about that is hard for them or a struggle, they're fine with being intersex and who they are," Turner said. "The only struggles they're really enduring are the political attacks."