Every parent makes agonizing health decisions for their child at crucial points in their lives.
Whether to administer a vaccine or antibiotics with certain side effects, or allow their child to undergo heart surgery, parents will sit with their child’s doctor, weigh risks and benefits and make a solemn choice rife with even life and death consequences.
Very rarely, infants are born with genitalia that does not fit the standard definition of male or female, and a few will need to undergo surgery to repair severe functional defects and restore anatomy that conforms to their gender.
But in this case, some activists say, choice should be taken away from parents and only the government would be able to decide who does and does not get surgery. As doctors, parents and advocates for children born with genital atypia committed to treating and caring for these children throughout their lives, we strongly reject any such move. Parents should hear from experts, scientists, doctors and yes, even those activists against surgery, but the choice, we insist, must rest with parents.
Known by different terms — intersex, atypical genitalia, or disorders of sexual differentiation, most affected babies will grow up never questioning their gender regardless of the appearance of their genitals. But there are some that seek an outright ban on infant genital surgery for “intersex” conditions. An activist movement that has teamed with Human Rights Watch alarmingly compares intersex surgery to sanctioned violence and torture.
However, criticism regarding this surgery does not stop at advocacy groups. In California, a state senator authored an anti-science resolution that condemned intersex surgery, and is now considering legislation that dangerously conflates intersex conditions with common genital atypical that has nothing to do with gender concerns. The proposed bill would put the state in the room where the most delicate and private conversations between doctors, parents, and patients happen.
Such political activism speaks to an agenda to interfere with a parent’s right and obligation to make medical decisions on behalf of their children. And a major problem with this approach is that there is no consensus regarding what “intersex” actually is, and the term gets conflated to include conditions that medical experts would not lump into this category.
Case in point is Congenital Adrenal Hyperplasia (CAH) – a potentially life-threatening endocrine disorder that is the most commonly diagnosed condition causing atypical genitalia. Since most children with CAH never question their gender and prefer surgery, CAH families reject the term “intersex” to define this condition. Studies show that when children underwent surgery later in life to repair their atypical genitalia, they overwhelmingly declared that they had wished that the operation was done in infancy. The largest CAH family support group is unequivocal that intersex activists seeking to ban infant genital surgery do not speak for them and cause them great harm.
CAH affected families hold that when they do choose surgery, they are not seeking gender re-assignment of their child. Instead, they seek only to preserve the option for procedures that restore function to the existing anatomy that an infant is born with to allow appropriate voiding and reproductive function.
Pediatric urologists have cared for these children for decades. Once considered a medical emergency, intersex conditions are managed very differently than they were in the past. Today, a multi-disciplinary approach is taken where experts in this field are a part of the medical decision-making process, including endocrinologists, therapists, psychiatrists, psychologists, social workers, and parents. No surgery takes place until everyone is comfortable with the decision, and sometimes no operation takes place at all.
Pediatric urologists realize that decisions made in the past in children with intersex conditions at times may not have been correct, but they were based on the prevailing science of the time.
As we have learned more about the science of the brain and sexuality, these sometimes erroneous decisions will not be repeated. Doctors do not have all the answers, but medical professionals look at these problems in their entirety, considering the physical and emotional wellbeing of our patients. We carefully analyze the numerous studies in this field to understand what happens to intersex children in our care, either when surgery is done, or what happens when it is not. This is the great privilege and responsibility those of us who take care of children take so seriously.
The term “intersex” is being weaponized by political actors to force an anti-science, anti-choice, politically charged restriction on a problem that is not defined and could ultimately cause real harm to children.
Long-term studies are needed in patients who underwent this surgery in the past, not anecdotes. Terms like “torture” and “violence” must be eliminated from the discussion. The efforts underway for a moratorium on all surgery in infants born with genital atypia is both dangerous and ill-conceived. It undermines parental rights, and it is a slippery slope towards government intrusions into the most intimate shared decision-making conversations between parents, children, and their doctors.
Dr. Lane Palmer is President of the Societies for Pediatric Urology, President of Pediatric Urology Associates, and Chief of Pediatric Urology at the Cohen Children’s Medical Center of New York. Dina Matos is the Executive Director of the CARES Foundation. The CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.