CHICAGO — Lurie Children’s Hospital could become the first institution to stop cosmetic surgeries on children who are born intersex — having genital traits that don’t fit binary ideas of male or female — amid mounting pressure from its employees and activists.
The hospital announced in a public apology Tuesday it was moving to end the surgeries on intersex children’s genitals unless the procedures are medically necessary or until patients are old enough to give meaningful consent to the procedures.
“We recognize the painful history and complex emotions associated with intersex surgery and how, for many years, the medical field has failed these children,” hospital officials said in a statement.
The statement is signed by Lurie’s President and CEO Dr. Thomas Shanley; Chief Medical Officer Dr. Derek Wheeler; Urology Division Head Dr. Earl Cheng; Adolescent and Young Adult Medicine Division head Dr. Robert Garofalo; and the hospital’s Sex Development Clinic team.
“As the medical field has advanced, and understanding has grown, we now know this approach was harmful and wrong,” hospital leaders said. “We empathize with intersex individuals who were harmed by the treatment that they received according to the historic standard of care and we apologize and are truly sorry.”
Internal pressure at Lurie to end the intersex surgeries — which have been deemed a human rights violation by the United Nations — was sparked by Dr. Ellie Kim, a research coordinator for Lurie’s Trans Youth Care Study.
Kim, a transgender woman who also makes music under the name SuperKnova, was the first of several Lurie employees to publicly come out against the hospital’s procedures, which involve the surgical construction of a clitoris or vagina.
“Surgeries like a clitoroplasty or vaginoplasty done in infancy completely take away bodily autonomy and the right for an individual to choose for themselves what they want their body, gender development or sexuality to look like,” Kim said in an interview a week before Lurie’s announcement.
Several other staffers also opposed to the surgeries. They declined to be interviewed out of fear of retaliation from their employer.
“I can directly empathize with the intersex community even though trans and intersex people have unique experiences and struggles,” Kim said. “There are a lot of parallels and direct analogies between what we’re fighting for.”
An online petition calling on Lurie to end the intersex surgeries also received a massive boost earlier this month when Indya Moore, MJ Rodriguez and Angelica Ross, the transgender activists and co-stars of Pose, shared the campaign on social media.
The petition, organized by activists of the Intersex Justice Project, has received more than 46,000 signatures from people demanding Lurie Children’s Hospital stop performing cosmetic surgeries on intersex children.
The hospital said it hasn’t performed these surgeries on any infant or child in the last five years, and it already had a policy against the cosmetic procedures unless children have congenital adrenal hyperplasia, a group of genetic disorders that affect the adrenal glands that produce important hormones.
“For patients of CAH, many of whom do not consider themselves under the intersex umbrella, the question of early surgery requires immediate and critical evaluation, as there remain unanswered questions about best practices, ethics and how to optimize medical outcomes,” hospital leaders said.
The hospital said it will temporarily halt these procedures on CAH patients while it “carefully and critically” evaluates whether to continue surgeries on children with CAH.
Lurie officials said the hospital will hire a person with CAH or an intersex person to help with that review, which will be published in a report to guide future best practices for CAH patients. Team members in the hospital’s Sex Development Clinic will also receive sensitivity training from an intersex person or advocacy group.
Intersex activists, who have opposed these cosmetic surgeries for decades, praised Lurie’s apology as a milestone toward reparations for intersex people and better medical care that doesn’t involve treating intersex variations as problems that need to be corrected.
“We’re saying it’s Intersex Day of Victory,” said Pidgeon Pagonis, a Chicago native and intersex activist who co-founded the Intersex Justice Project with Sean Saifa Wall, an intersex activist in Atlanta.
“Finally the intersex community has a major win. We’re not used to victories, so this is a celebration for all intersex people.”
In a statement from IJP and interACT, an advocacy group for intersex youth, activists criticized the hospital for exempting CAH patients from their policy against the cosmetic surgeries. They also called on the hospital to hire at least two intersex people with backgrounds in human rights advocacy to review the policy.
Wall, who was born with androgen insensitivity syndrome, said he hopes Lurie’s new stance on the surgeries spread to other institutions, including Columbia University’s New York Presbyterian Hospital. That’s where doctors castrated Wall at 13 years old and put him on feminizing hormones as a form of treatment for the condition.
Wall said he’s “still in shock” to see that the tides are changing.
“It feels like we’re on the cusp of something powerful here,” Wall said. “We have grounds now to start challenging hospitals throughout the U.S. to stop these violent and harmful practices.”
Pagonis said their next steps include pushing for legislation protecting intersex children and creating a hotline for families with intersex children who need an intersex advocate to guide them through doctors visits and other medical decisions.
“This is the tipping point,” Pagonis said, adding that recent solidarity from the transgender community — including from Kim and Moore of Pose — reenergized the Intersex Justice Campaign’s movement.
In an interview with Block Club, Moore said transgender and intersex liberation are inherently tied to one another.
“Whenever somebody exists in a way that counters what we’re taught about sex and gender, we’re forced to conform to these binary ideas that just aren’t true,” Moore said. “I see that happening to trans people, and I see that happening to intersex folks.”
Moore, who is from the Bronx but currently staying in Chicago, said both communities are fighting for the right to bodily autonomy, and the forced intersex surgeries are a form of gender violence.
“If intersex parents can give consent for their babies to have these mutilations before they’re even old enough to object, that’s the same as parents sending their trans children to conversion therapy without consent,” they said. “Our liberation is linked.”
Jake Wittich is a Report for America corps member covering Lakeview, Lincoln Park and LGBTQ communities across the city for Block Club Chicago.
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