After a yearslong advocacy campaign waged by activists, the Ann & Robert H. Lurie Children’s Hospital of Chicago has become the first hospital in the nation to apologize for performing cosmetic genital surgeries on intersex infants.
In a statement posted Tuesday to its blog, the hospital said it understood its “approach was harmful and wrong” – a reference to surgery to make genitalia appear more typically male or female.
The hospital 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.”
It went on to say it was “evolving” its policies on the matter and that it would not perform such surgeries unless they were medically necessary.
Intersex is an umbrella term used to describe people born with bodies that are perceived as differing from typical “male” and “female” categories. In recent decades, irreversible cosmetic genital surgeries have been relatively common for infants born with atypical sex organs to bring them more in line with a “typical” male or female body.
But recently, intersex activists have argued that a person should have the legal right to consent to cosmetic surgeries performed on one’s own body – an ability infants do not have.
Multiple human rights organizations have argued that the practice violates a person’s human rights and that these surgeries can cause lifelong pain, scarring, loss of sexual function, the need for lifelong hormone replacement and maintenance surgeries, as well as psychological harm similar to that of child sexual abuse victims.
In its blog, Lurie Children’s Hospital said that “irreversible genital procedures, particularly clitoroplasty, should not be performed until patients can participate meaningfully in making the decision for themselves, unless medically necessary.”
The hospital did not indicate how many such procedures were done over the years. It did say it has not performed a clitoroplasty on an infant or a child in five years.
The policy does provide an exception for patients with congenital adrenal hyperplasia, or CAH, noting that some patients believe it should not fall under the intersex label.
Activist Pidgeon Pagonis was born intersex and underwent a clitorectomy at Lurie Children’s Hospital as a child to bring their genitalia more in line with a typical “female” body.
“[Lurie] took me and put me in their factory for boys and girls, basically,” Pagonis told CNN. “[Lurie] took my intersex body, threw me on the girl conveyor belt and tried to put me into this box that I was never meant to be.”
“I just started crying when I found out” about the policy change and apology, Pagonis added. “I think it was just this relief of like, I can’t believe this happened.”
Regarding Pagonis’ comments, Dr. Robert Garofalo, division chief of adolescent medicine at the hospital, said: “It is difficult to discuss any one patient or patient experience. Our multi-disciplinary team takes patient care extremely seriously and always has a very personalized approach prioritizing patient education and is focused on optimizing care.”
Pagonis now identifies as nonbinary and intersex. They founded the activist group Intersex Justice Project, along with intersex activist Sean Saifa Wall, with the specific aim to end these surgeries across the country.
The decision from Lurie comes after a three-year concerted campaign from Intersex Justice Project, first through protests outside the hospital and then through a petition which gained steam after support online from celebrities, including transgender actress Indya Moore and actress Gabrielle Union.
Activists attribute Lurie’s apology and policy change in part to the hospital’s own employees speaking up, especially the first employee to do so, Dr. Ellie Kim, who tweeted July 13 about the controversy.
“I think it’s a great step in the right direction,” Kim, who is transgender, tells CNN. “There’s still a lot of work to be done, to say the least, but at least for now, in my opinion, it’s a major victory and a major step forward.”