When Jennifer Pagonis was born in the winter of 1986, her parents brought her home to a wardrobe of pink and white, ruffles and frills.
But three months later, Jennifer’s mother arrived at the pediatrician’s office with what would turn out to be a life-changing question: Did her baby girl’s genitals look swollen?
Jennifer was referred to Children’s Memorial Hospital in Chicago, where doctors ran blood tests and quickly reached a conclusion: Jennifer was one of a tiny number of babies who are born intersex, or with bodies that don’t fit standard anatomical definitions of male or female. She was genetically male — with XY chromosomes and internal testes, but she also had a small vagina and an enlarged clitoris. Doctors told her stunned parents that she could never have children, but with surgery, she could look entirely female.
And that was how, at age 4, Jennifer was admitted to what is now Lurie Children’s Hospital for cosmetic surgery on her genitals. During a two-hour operation, to which her parents consented, a plastic surgeon cut into Jennifer’s clitoris, removing about two centimeters of tissue. In a follow-up operation when Pagonis was 11, doctors enlarged her vagina.
The result of those two operations, according to Pagonis, now 32, was scarring, loss of sensation, emotional trauma and severe sexual impairment.
“No matter what they say, or how they sugarcoat it, it’s medically sanctioned violence and torture,” said Pagonis, who no longer identifies as female and now goes by the first name Pidgeon.
For more than two decades, intersex people have denounced the surgeries performed on their genitals during infancy or childhood as nonconsensual and damaging, citing consequences including pain, loss of sexual sensation and incorrect gender assignment.
The United Nations High Commissioner for Human Rights, three former U.S. surgeons general and Human Rights Watch are among those who have recently called for the childhood surgeries to stop until research can show a clear benefit, or to end immediately. In August, California became the first state to pass a resolution discouraging the surgeries.
“We want to ‘first do no harm,’” said former Surgeon General Dr. Joycelyn Elders, who last year co-authored a report on genital surgeries on intersex children, citing the risk of “severe and irreversible physical harm and emotional distress.”
The surgeries are almost always cosmetic and medically unnecessary.
Yet in Illinois, the most controversial surgery on intersex children — clitoral reduction — is still being performed.
From 2008 to 2017, 26 children under age 7 had clitoral reductions statewide, according to data the Tribune obtained from the Illinois Department of Public Health.
Although research on long-term outcomes for patients contains major gaps, a recent study of 27 intersex children drawn from a group of 11 hospitals, including Lurie, found that 22 percent of patients — and 36 percent of male patients — experienced major complications within a year of surgery, including narrowing of the vagina and new holes on the penis where urine exits.
Doctors who perform intersex surgeries say they provide parents full and accurate information about risks, that treatment has improved greatly since Pagonis was a child, and that studies show that many patients do well with early surgery.
“Surgery should be presented as an option to families if they desire it,” said Dr. Earl Cheng, a professor of urology at Northwestern and director of Lurie’s Sex Development Clinic, where intersex children are treated.
“That is really the crux of the matter: Do you preserve parental rights, as long as (surgery) is presented with an element of transparency and honesty?”
Intersex activists, who say decisions about surgery should be postponed until patients are old enough to give meaningful consent, point to a growing number of parents who say their children are flourishing without early surgery.
Kristina Turner of northern Washington state, said her 11-year-old child Ori, who is intersex and is growing up without surgery, “is so confident and outgoing, and we have never had any anxiety or depression or anything like that.”
In Chicago, Pagonis, a Pilsen-based filmmaker and intersex educator, is calling on Lurie to stop doing early surgeries, a demand backed by a social media campaign and two street protests, including one in July that brought a crowd of 90 to the doorstep of the venerable children’s hospital.
“These are our lives; this is what’s important to us,” said Hans Lindahl, communications director for the intersex advocacy group interACT, who attended the protest.
“Like any group that’s been threatened or had their human rights denied, there’s really no choice: You fight for your community.”
‘It felt like my whole life was a lie’
As a child growing up on the Northwest Side, Pagonis lived comfortably as an athletic tomboy, always up for a neighborhood game of hide-and-seek or running bases.
“I didn’t feel limited by being a girl,” recalled Pagonis, who prefers to be referred to by the pronoun “they.”
“I felt like I could grow up and be the president.”
But fifth grade was different. When the other girls had started to talk about getting their periods, Pagonis was ashamed to learn hormone replacement pills would be needed to experience other aspects of puberty, including a growth spurt and breast development. In keeping with medical practices at the time, Pagonis had only been told the bare minimum about their medical situation: that doctors had removed some “tissue” — actually their internal testes — when they were little, that they couldn’t have babies and that they couldn’t menstruate.
Even the vaginal surgery when Pagonis was 11 was presented by doctors as a fairly minor procedure, although afterward, the many stitches and the long recovery signaled to Pagonis that they hadn’t been told the whole story. Everything had to be endured in secrecy, Pagonis said, because the doctors made it clear that Pagonis’ physical differences were “private information” that would cause rumors at school.
“I went into a place where an 11-year-old shouldn’t have to go,” Pagonis said. “You start thinking about your body, and your genitals, and how you are going to hide this from other people.”
At Trinity High School in River Forest, Pagonis was on the honor roll, played varsity softball and showed up at formal events in full makeup and sparkling gowns. But behind the scenes, Pagonis cried all the time.
“I was so angry about everything: about my body, and about those doctor’s appointments, and just knowing that something was horribly wrong,” Pagonis said.
Pagonis didn’t learn they were intersex — or what used to be called a hermaphrodite — until freshman year at DePaul University. A psychology professor was lecturing about the intersex condition androgen insensitivity syndrome (AIS), in which patients are genetically male and can look like women, but don’t menstruate. “That sounds like me,” Pagonis thought.
At the time, intersex people — sometimes referred to as the “Invisible I” in LGBTQIA — were even less visible than they are now. The larger transgender community hadn’t yet achieved its current high profile, a development that has encouraged intersex activism, even though transgender and intersex are vastly different. A person who was born male but identifies as female, or vice versa, is transgender; a person whose birth body isn’t entirely male or female is intersex.
After the lecture, Pagonis went back to their dorm room and called their mother, Laurie Garcia, who checked a medical record and confirmed that Pagonis had androgen insensitivity syndrome. Pagonis remembers throwing their flip phone against the wall so hard it broke: “It just felt sickening,” they said. “It felt like my whole life was a lie.”
Pagonis’ mother said she deeply regrets allowing the surgeries, but the doctors were insistent, telling her and her then-husband that surgery wouldn’t harm their daughter sexually and would allow Pagonis to have a “normal life” as a woman. Pagonis said they’re no longer angry with their mother, who strongly supports their activism.
After learning that they were intersex, Pagonis ordered their medical records and learned the full extent of their surgeries. At first, Pagonis was confused and ashamed, but over the next two years, their confidence grew, as did their opposition to surgeries on intersex children.
“I said: ‘This is going to end, and I’m going to be a part of it,’” Pagonis recalled.
Intersex surgery today
Pagonis’ surgery was performed in the era dominated by John Money, a pioneering sex researcher at Johns Hopkins University who, starting in the 1950s, promoted the theory that gender in early childhood was largely a matter of nurture, not nature. If an intersex baby was genetically male with a very small penis, Money believed that, given the poor results of male genital reconstruction surgery, the best solution was often that the child be surgically altered to create female genitals, and raised as a girl.
Money’s more extreme theories came under question in the 2000s, thanks in part to new data indicating that genetic boys who were raised female often grew up to identify as male.
And today — in a nearly 180-degree shift in medical practice — genetic males such as Pagonis are frequently raised as boys, with surgery to make their genitals look more masculine.
For surgeons, this is progress: a better gender assignment and less invasive surgery.
But for activists, this is history repeating itself: With evidence that one kind of surgery creates problems, surgeons are turning to another kind of surgery — again with relatively little data on long-term outcomes.
Doctors had thought that surgeries to make a child’s genitals look more male had fairly low risks. But in the last three years, researchers have found long-term complication rates of 30 to 68 percent for a key masculinizing operation, in which the opening through which a boy urinates is moved from the scrotal area to the tip of the penis. Recent studies show problems such as fistulas, or new openings from which urine exits, and surgical wounds that reopen and heal in the wrong position.
Parents and advocates, meanwhile, say that doctors aren’t giving them full information about the potential downsides of surgeries.
“It just makes me really upset,” said Meg Robertson who, as a member of the welcoming committee of the Androgen Insensitivity Syndrome-Differences of Sexual Development (AIS-DSD) Support Group, has spoken to about 100 parents of intersex children over the past five years. “I can’t tell you how many families I’ve talked to who were not explained any of the risk” of masculinizing surgeries, she said.
Kristina Turner, the mother of 11-year-old Ori, who is intersex, said a doctor at a West Coast hospital pressured her and her husband to allow feminizing surgery. “Basically (the doctor) felt that our kid could hate us if we didn’t do surgery,” Turner said.
A father in New York state told the Tribune that he was pressured to allow vaginal surgery on his now 3-year-old daughter at two well-regarded East Coast hospitals, both with dedicated intersex treatment clinics.
“It was pretty confrontational,” the father, who asked not to be named, said of one exchange with a surgeon. “He was just basically like, ‘If you don’t do surgery, you’re putting her medical health at risk; you’re putting her psychological health at risk. She’s going to be depressed, and she’s going to have anxiety.’ ”
The parents decided against clitoral reduction and vaginal surgery, and the child is currently flourishing, her father said.
“She’s a sweet kid, she’s got lots of friends, she’s very social, she’s very talkative,” he said. “And just seeing her develop gives us a lot of confidence that we’ve made the right decision.”
The rise and the reckoning
Pagonis’ operations were part of a shift in medical care for the estimated 1 in 5,000 babies born with atypical genitals — a subset of the already tiny group of intersex babies — that began when Money, the Johns Hopkins sexologist, reported his findings on intersex people and gender.
Money recommended that the gender of an intersex child be decided as soon as possible, with the main consideration being the appearance of the genitals, not the child’s genetic makeup or the presence of ovaries or testes. And he said genital surgery should take place early, so children would not be confused by genitals that didn’t match their gender. Before surgeons fell under Money’s sway, cosmetic genital surgery was performed mostly on consenting intersex adults, not children.
Among those treated in Chicago during the height of the Money era was Cynthia Johnson, who was declared a boy at birth in Evanston in 1965, with male XY chromosomes, small testes and a phallus — a term that can be used to describe an enlarged clitoris or a small penis.
Having decided that Johnson’s anatomy was “more complicated than had been anticipated” and that Johnson would do better as a girl, doctors at Children’s Memorial Hospital, which is now Lurie, removed the child’s testicles and much of the phallus when she was 3 months old, according to Johnson’s medical records.
Johnson, 53, of Carlsbad, Calif., who prefers to go by the pronoun s/he, doesn’t blame h/er parents, who were following the best medical advice at the time, or even the doctors, who meant well. But Johnson, who identifies as intersex, not female, said the operation was an “atrocity” that left h/er without h/er birth body and natural hormones.
In childhood, Johnson felt neither male nor female, and in h/er teens, 20s and 30s had virtually no sex drive.
“I felt like I was kind of neutered,” said Johnson. “You castrate a biological male, and that’s what you’ve got.”
Testosterone, which Johnson started taking in h/er 40s, helped sexually. And during an hourlong interview, Johnson emphasized that others had suffered more: “I’m capable of achieving orgasm. I wasn’t cut up so bad that I was unable to do that. There are many intersex people who can’t get to the promised land of sexual fulfillment because of what is done to them. That is a travesty. That is not OK.”
Money’s theories suffered a severe blow in 1997, when another researcher followed up on Money’s most famous case: a Canadian boy, David Reimer, who was not intersex but lost his penis as a baby to a botched circumcision. Money advised raising the boy female, with genital surgery, and reported that at age 7 Reimer was adjusting well. But another researcher found that Reimer had started living as a male again at age 14, after years of struggle with his female identity. Reimer later killed himself.
In the 2000s, the field of intersex surgery continued to come under scrutiny.
A groundbreaking British study in 2003 linked clitoral surgery with severe sexual impairment, finding that 39 percent of the 18 women who had had the procedure reported they were unable to reach orgasm, compared with none of the women with atypical genitals who had not had surgery.
By 2004, a prominent surgeon, Dr. Ian Aaronson, was telling an audience at the American Urological Association’s annual conference in San Francisco that the field of intersex surgery was “almost in a state of paralysis.”
Aaronson’s presentation, obtained by the Tribune from Human Rights Watch, began with an image of rolling dice.
“Anybody who ventures to offer an opinion on gender assignment in the intersex baby today is gambling not only with the future of the patient, but almost certainly with his own career,” Aaronson said.
Within two years, the field had refocused. The 2006 Chicago Consensus, a blueprint for the future created by international experts after a meeting in Chicago in 2005, called for multidisciplinary care, open communication with patients and families, and a parental role in decision-making.
Childhood surgery, long-lasting impact
Outgoing and spontaneous, with big brown eyes and dimpled smile, Pagonis held court during recent interviews at a Pilsen coffee house, greeting friends old and new with handshakes and hugs.
Pagonis did their senior thesis on intersex surgeries and pursued the issue while earning their master’s degree in gender studies at DePaul University. After graduate school, Pagonis made a splash as an intersex activist. They were honored at the Obama White House for LGBT art and activism, appeared on the TV series “Transparent,” co-starred in a BuzzFeed video with more than 4 million views, and posed on the cover of National Geographic. Now, Pagonis speaks at schools and businesses, and obtains grants for projects such as a series of photographs of intersex people posing with their medical records.
“I love my life,” Pagonis said.“It’s exhausting sometimes, but I love it.”
Still, Pagonis grows somber when the topic turns to their childhood surgeries.
The operation to remove Pagonis’ internal testes at age 1 left Pagonis reliant on unpredictable replacement hormones: “It’s like going through puberty all the time.” The vaginal surgery left noticeable scarring and sexual pain, and the clitoral reduction resulted in a lack of pleasurable sensation.
“That makes sexual intimacy very hard, and when sexual intimacy is very hard, it makes relationships pretty hard too,” Pagonis said. “Even though I’m lucky and the people I fall in love with usually are so loving and they’re like, ‘It’s OK, that doesn’t matter to me’ and I believe them, it still makes it very hard.”
Intersex groups overwhelmingly support Pagonis’ position that early intersex surgery is harmful, and recommend waiting until patients are old enough to decide for themselves whether they want genital surgery.
But there is one large support and advocacy group that strongly supports access to early surgery: the CARES Foundation, serving those with congenital adrenal hyperplasia (CAH).Women with CAH have female genetics and female internal reproductive organs, but due to exposure to male hormones in utero can be born with genitals that look somewhat — or almost entirely — male.
CAH patients, who often don’t consider themselves intersex, have been slow to come forward and defend surgery, but with growing pressure to stop the procedures, that may be changing.
“I want to scream this from the rooftops,” said CAH patient Lesley Holroyd, 61, a registered nurse from Florida, who does not identify as intersex.
Holroyd said she’s grateful she received a clitoral reduction at age 3 and vaginal surgery in her teens. The surgeries didn’t harm her sexually, she said, and without them, she would have had to live with genitals that didn’t match her gender.
“I think it would have had major psychological effects on me,” said Holroyd. “As it happened, I grew up without that shame, that embarrassment from peers. I know what my anatomy looks like now; I can’t think what it would look like without surgery.”
Pagonis’ July protest brought top intersex activists to the doorstep of Lurie Hospital.
There was the model Hanne Gaby Odiele, who came out as intersex last year. There were movement veterans such as Anne Tamar-Mattis, the founder of the interACT advocacy group, and Tamar-Mattis’ spouse, Suegee Tamar-Mattis, a physician who is intersex.
But for a few minutes all eyes were on a self-possessed 5-year-old in an oversized yellow T-shirt.
Having invited some children up to the front of the crowd, Pagonis asked little Rosie Lohman, of Milwaukee, if she could repeat a slogan into the bullhorn. Rosie leaned in and declared in a loud, clear voice: “End intersex surgery!”
Rosie, who has congenital adrenal hyperplasia, is one of a growing number of intersex children whose parents are raising them without early genital surgery.
Rosie, now 6, is doing beautifully, said her father, Eric Lohman, who with his wife, Stephani, wrote a book about their experience called “Raising Rosie.”
Their daughter has close school friends with whom she shares elaborate games and inside jokes, and a strong interest in drawing, ninjas and Legos. When a little boy at the local wading pool questioned whether she was a girl because of her short hair and knee-length boys swim suit — worn for sun protection — Rosie confidently corrected him: “I’m a girl because I say I’m a girl.”
“That sort of settled it,” her father said with a chuckle. Rosie and the boy went off to play.
Rosie knows that she’s intersex, her father said, but he and his wife have kept their explanations simple: “She knows that her body is different, in the context that all bodies are different.”
In March, 11-year-old Ori Turner, who prefers to go by the pronoun they, teamed with their mom to give a TEDx talk about their positive experience as a young intersex person and their opposition to surgery.
“I’m almost always happy and excited,” Ori said during the TEDx Talk.
Ori is “super confident,” makes friends easily and is excited about intersex activism, added their mother, Kristina Turner. After the TEDx Talk, which was Ori’s idea, a videographer for a digital news company followed Ori and their family for a day, visiting the co-op for home-schoolers where Ori takes some classes. Turner said Ori helped explain the presence of the videographer to their classmates, not all of whom had known that Ori is intersex.
Afterward, the students gave Ori high-fives and compliments.
“It was really, really beautiful,” said Turner. “Those are the moments that really touch you as a parent, when you see them at 11½ years old and giving TED talks and being open about who they are and being embraced by their community and their friends.”
How will these children fare in the long run? With little long-term data, that’s a key question, for both parents and surgeons.
“If I knew there were absolutely zero repercussions of living with abnormal genitalia later on in life, why would I ever offer early surgery?” said Dr. Cheng, the Lurie surgeon. “I would never do that.”
Dr. Cheng said he can’t predict the future of the surgeries.
“It may not be in my hands,” he said, referring to the resolution in California and the possibility that stronger anti-surgery measures will be introduced.
Sitting in the sunshine at an outdoor cafe, Pagonis said Lurie will likely stop doing the surgeries in two to three years, provided that activists can sustain their momentum.
“It’s going to come down to a battle of wills,” Pagonis said. “Who is willing to keep up the pressure longer? That’s what it’s going to take.”