A hospital in Chicago has publicly apologized for the harm done by genital surgeries on intersex infants and chldren and pledged to avoid many such surgeries going forward -- and it's believed to be the first U.S. hospital to do so.
"Decisions about if and when surgery is performed, with the sole goal of changing the appearance of genitalia, are some of the most personal decisions an individual can make," says a statement issued this week by the Ann & Robert H. Lurie Children's Hospital of Chicago. "Our internal, and now public, policy is that, in intersex individuals (**recognizing those with congenital adrenal hyperplasia (CAH) as potentially a separate patient population) irreversible genital procedures, particularly clitoroplasty, should not be performed until patients can participate meaningfully in making the decision for themselves, unless medically necessary."
The statement notes that the hospital has not performed a clitoroplasty, a procedure aimed at creating a clitoris with "normal" appearance, in five years.
The hospital plans to assemble a group of stakeholders to study the ethics of surgery on infants with CAH, a glandular condition that leads to hormone imbalances and can sometimes result in atypical genitalia. Most people with CAH do not need surgery, but Lurie will examine whether consent should be a requirement for those who do, and it will not perform any such surgeries besides those deemed medically necessary until the group releases its findings.
The group will include LGBTQ+ people, intersex individuals, people with CAH, community members, families, and medical experts, and the hospital will hire a person who is either intersex or has CAH to lead the body.
Advocates for intersex people welcomed the hospital's statement but said it doesn't go far enough. "Lurie's statement hints at exempting a large group of people from discussions on the ethics of early genital surgeries -- those with a variation called Congenital Adrenal Hyperplasia, one of the most common medical terms linked to intersex genital differences," says a press release from the Intersex Justice Project and interACT: Advocates for Intersex Youth. "Further, the statement commits to adding only one intersex-identified individual to decisionmaking in their clinic -- meaning that up until now, no intersex people have been continuously consulted and/or compensated for providing feedback in the operation of a medical clinic meant to serve their own communities. IJP further demands that Lurie hire at least two intersex people with backgrounds in intersex human rights advocacy."
"IJP further demands free medical care that does not position intersex variations as problems to be fixed," the release notes. "This includes providing hormones and psychological support for intersex young people and their parents."
The statement from Lurie comes after three decades of activism, including a three-year campaign by IJP that has included a petition that gathered more than 45,000 signatures. There has also been activism within Lurie, initiated by Dr. Ellie Kim, while celebrities led by Pose star Indya Moore have also publicly called out the hospital.
Besides clitoroplasty, other surgeries commonly performed on intersex infants and children include moving a working urethra, removing functional testes, and creating or extending a vagina, according to IJP. These surgeries have been condemned by every major human rights group that has considered the issue, IJP says.
IJP cofounder Pagan Pagonis talked Thursday of being subjected to dehumanizing treatment at Lurie. "When I was born, I wasn't admitted to a caring medical facility. I was put on a medical factory's conveyer belt -- one labeled 'girl,'" Pagonis said at an online press conference, according to Block Club Chicago. "And my beautifully healthy, unique, nonbinary, and intersex body was remanufactured into what Lurie Children's Hospital deemed more appropriate and normal."
Another cofounder, Sean Saifa Wall, recalled receiving similarly harmful surgeries at a New York hospital at age 13. Wall called on medical providers to end such procedures. "This is an appeal to all medical students, nurses, ob-gyns, pediatricians, endocrinologists, and doctors working with children for you to really commit to lasting change at your facilities," Wall said.