When Kimberly Zieselman was 41, she got hold of her medical records from Massachusetts General Hospital. What she found was shocking.
The words "male pseudo hermaphrodite" were written on her chart.
Zieselman discovered she was born with XY chromosomes. Until that moment, she had no idea she was born intersex, an umbrella term used to describe people born with male and female anatomical characteristics.
As a teenager, Zieselman came to discover, doctors had performed surgery on her reproductive organs in an effort to conform her anatomy to fit one mold — a move that had serious psychological ramifications for her later on in life, she said, and that was done without her complete, informed consent.
Like, Zieselman, many intersex adults who underwent procedures as babies have dealt with painful consequences later in life. Now 53, Zieselman has become a part of a growing movement within the intersex community speaking out against surgeries performed on intersex babies. Unless surgery is medically necessary, activists say, doctors should not interfere. Some activists are lobbying their state governments to pass legislation to ban surgeries that are medically unnecessary – such legislation has already been proposed in California and Connecticut.
In the medical community, though, many say the issue should not be legislated, and that medical decision-making for children should remain parents’ responsibility after consulting with medical professionals.
A 2000 study in the American Journal of Human Biology found that 1.7 percent of babies are born intersex. There are many variations of intersex that manifest as differences in external genitals, internal reproductive organs and sex chromosomes. Another term used is DSD, which stands for Differences of Sex Development.
In Zieselman’s case, she has Complete Androgen Insensitivity Syndrome, or CAIS. She was born with external female anatomy and internal testes. This means her body doesn’t respond to testosterone and instead converts it to estrogen. In 1982, when Zieselman was 15, doctors removed her testes and told her and her parents that it was a partial hysterectomy, when, in fact, she never had a uterus or ovaries. All she knew was that she would never menstruate or be able to get pregnant.
“My parents were told I was born with partially formed reproductive organs,” Zieselman said.
She felt betrayed.
“I realized I had been lied to by the medical community, by doctors who had been involved in this surgery and diagnosis. The truth was hidden even from my parents,” she said.
Zieselman believes her doctors thought they were doing what was in her best interest at the time. But she disagrees.
The procedure, she said, meant having to take hormone replacements for the rest of her life. She maintains that had doctors not removed her gonads, she wouldn’t have to take estrogen supplements. The psychological toll of learning the truth about her surgery was also devastating.
“It’s that feeling of being told you’re not good enough. That there is something wrong with your body, that it is something to be shameful of and something to hide. And the fact that you’re lied to. It was so shameful that the doctors didn’t even tell your parents the whole story,” she said.
Learning she is intersex was a turning point for Zieselman. The married mother of two who lives outside of Boston is now the executive director of InterACT, an advocacy group for intersex youth. She’s also publishing a memoir next spring, titled "XOXY."
What Is ‘Medically Necessary’?
Activists and medical professionals alike acknowledge that in rare, severe cases involving the reproductive organs — like when there is no passage for urine, or when the bladder is on the outside of the body — surgery is imperative.
Activists say that the types of surgeries that they condemn are not medical emergencies. It’s common for infants with atypical genitalia to undergo procedures within the first year of their lives to make their anatomy look more traditionally male or female. Some baby girls undergo clitoral reduction, a cosmetic surgery, solely for appearance reasons. In 2013, the U.N. Human Rights Council deemed these procedures “cruel.”
But Jack Elder, chief of pediatric urology at Massachusetts General Hospital, said the term "medically necessary" can be interpreted differently, and he thinks legislation gets in between the physician and patient.
“How can somebody else, an outside group, a legislative body, decide what is medically necessary or unnecessary when we're dealing with genital ambiguity?” Elder said.
Elder says he and his colleagues don’t dictate what parents should do. Instead, he encourages parents of his patients to educate themselves on the pros and cons of having their infant undergo surgery.
“We're just trying to help parents and provide some guidance. They might say, ‘What do you think I should do?’" he said. "You've got to make a decision at some point, because when they hit puberty, it’s going to create issues, and the surgery is a lot more involved.”
As the debate around these surgeries grows fiercer, pediatric urologists have found themselves being increasingly questioned about their practices surrounding surgeries on intersex babies. WGBH News reached out to three other hospitals in and around Boston and pediatric urologists declined, two of which cited the sensitive nature of the topic.
In March 2018, the Societies for Pediatric Urology and the American Urological Association issued a joint statement on pediatric decision-making. They said they believe medical decision-making for children should remain parents' responsibility after consulting with medical professionals and should not be legislated. The statement also said that children should be involved in these decisions.
In Nov. 2018, the Massachusetts Medical Society’s Committee on LGBTQ Matters submitted a report to MMS, recommending hospitals create teams designed to assess the needs of intersex babies and proposing that MMS advocate for a delay of surgery.
An ’Overwhelming’ Choice For Parents
Parents who have just welcomed a newborn can find themselves overwhelmed with a multidisciplinary team made up of pediatric urologists, endocrinologists and pediatric gynecologists and social workers.
A Boston-area mother, who asked not to be named to protect the identity of her child, has a daughter with an intersex condition who was treated at a different Boston hospital three years ago. Within a couple days of their daughter’s birth, she and her husband met with a team of 15 people.
“[It] is very overwhelming, and everyone is telling you different things: ‘She doesn’t have a uterus, there are testes,’" she remembered. "They started talking about her vagina hole size and talking about intercourse for her one day. It was hard to talk about my daughter’s sexual health when she was just born.”
She and her husband felt some pressure to have their daughter’s gonads removed. They connected with an intersex support group in search of advice.
“We heard adults telling us that they felt violated, that they had to have multiple surgeries. We were shocked at the horror stories we heard,” she said.
When she called their daughter’s pediatric urologist with their decision not to have their daughter’s testes removed, she said he was visibly unhappy with their decision. He abruptly ended the meeting.
“In the beginning when we made the decision, we were still skeptical. Like, is this real? We were nervous that we only talked with people who were unhappy — and rightfully so. But the more we talk about it, the more we feel really strongly against surgeries,” she said.
Their daughter could develop secondary male characteristics once she hits puberty, but this is a possibility her parents have accepted. They believe their daughter should decide what she wants to do with her body when she’s older.
Dina Matos, executive director of the CARES Foundation, an organization based in New Jersey that offers support for people with Congenital Adrenal Hyperplasia — the most common DSD — said the organization is not for or against genital reconstructive surgery and that their role is to educate parents and patients.
“We always encourage people to get more than one opinion. The one thing we highlight most importantly, is if they decide that surgery is indicated with their child, that they seek out an expert," Matos said. "It really takes the surgeon with significant experience, and we really only refer to three or four surgeons in the country right now.”
When Surgery Isn’t Even An Option
For some, surgery is never an option. Tatenda Ngwaru, an intersex activist from Zimbabwe, recently moved to the suburbs of Boston.
“Some people tried to burn down my father's house and kill all of us. And this was done just because of me, because I have a big mouth,” Ngwaru said.
When Ngwaru was born, doctors mistook her enlarged clitoris for a penis. She was raised as a boy for the first 10 years of her life, until doctors discovered she had ovaries. It was what she calls an “aha moment” — she never felt like a boy. But in her small town, going from son to daughter was out of the question.
“It had always been treated as an abomination, as bad. Back then they used to say we're the ones who will give bad luck to the community,” Ngwaru said.
Her parents, stunned by this news, didn’t want her to be bullied, so they urged her to continue wearing a boy’s uniform throughout high school. It was agonizing.
“I remember sleeping at night sometimes and thinking, ‘Couldn't morning just come so that we can get it over with? Or maybe morning shouldn't come at all,’ because I didn't want to deal with daylight and having to be out and pretending and hiding something. There's nothing as painful as an untold story that you have to hide inside,” she said.
Ngwaru waited until she was at college in a different part of Zimbabwe to live as a woman and started Zimbabwe’s first intersex advocacy organization. But trouble soon followed. She was attacked, her office was raided and her family was threatened.
So she fled for the U.S., seeking asylum from gender persecution. And she thought things would be different here.
“I thought, they are promoting transgender lives on their TV shows. Clearly, they must know about intersex. I had a rude awakening. Nobody seemed to know what intersex is. And in America what was most shocking for me are the surgeries that had been done on infants,” she said.
Zieselman said she wants attitudes to shift in the way they recently have for transgender people.
“With transgender children, what the standard of practice has become is to do reversible procedures first and provide a lot of psycho-social support to the child and family, so no irreversible decisions are made too quickly until the child is really sure about what they want," she said. "Why aren’t we using the same standard of practice for intersex children?”
Massachusetts voters may someday see a push for legislation banning medically unnecessary surgeries on infants. Zieselman said she is in discussion with state lawmakers about proposing a bill "to protect intersex children."
“All humans have bodily differences, and if there’s nothing making them sick or interfering with their health, then there’s no reason to modify them," she said. "Intersex people can grow up without surgery and be happy and healthy.”
Correction: A previous version of this story misspelled Kimberly Zieselman's name.