CHICAGO _ 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 Chicago 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."
