Perhaps the most terrifying aspect of parenthood is the realization that, at some point, you’re going to screw up. From birth methods to feeding types, from sleeping arrangements to education and daycare options, raising a child is a veritable minefield of choice.
Nowhere are parental decisions more fraught than for the caregivers of intersex children—kids who are born with biological differences of sex development. Because of the stigma and shame associated with intersex, statistics on its prevalence vary widely, but the incidence of intersex traits is thought to be as high as 1-2 percent, while intersex conditions leading to medical attention occur in approximately 1 in every 2000 births.
In medical school, I was taught that a consult for what is often called “ambiguous genitalia” (a controversial term used by health professionals that is exactly what it sounds like) was considered an emergency. While it is true that one of the syndromes (Congenital Adrenal Hyperplasia) that falls under the intersex umbrella can be life-threatening if not treated, being intersex in itself is not a medical emergency. What most of my attendings felt, however, was that the parental anxiety surrounding intersex diagnoses was a psychological Defcon One.
Driven in part by the perception that the distress felt by intersex moms and dads desperately needed to be alleviated, some pediatric urologist have sought to “correct” intersex for decades, performing irreversible surgeries to “normalize” the genitalia of infants.
Over the past two decades, there been a growing chorus of intersex adults who have grown up with the devastating consequences of the decisions made by their parents in a time of great stress and confusion, often with incomplete information. When surgical decision making is driven by fear, by anxiety of the unknown, and by ingrown assumptions about what a person’s chromosomes say about what gender they will identify as or who they will be attracted to, the patient and their family suffers. More and more, clinicians are realizing that psychosocial support, rather than surgery, may be key treatment of intersex. Indeed, decisional regret (a kind of surgical buyer’s remorse) is present in up to half of parents who allowed cosmetic procedures on their children’s genitalia.
Because if there’s anything I know as a surgeon, it’s this: all surgeries can have complications. The litany of suffering visited upon intersex bodies is long. Some have lived with painful intercourse for their entire lives. Others have been rendered menopausal before they’re even old enough to drive. Then there are the people who were surgically assigned one gender at birth, only to identify as the other as they grew older. Stories like this are what prompted me to write my novel None of the Above, which was loosely based on my experience treating an intersex girl in residency. My patient’s family, in retrospect, never really understood what they were getting into when they signed their child up for surgery.
The process of obtaining consent for an infant whose personality and values are not formed yet is not easy, and more often than not parents accede to the suggestions of their doctors, who have invariably internalized a corrective agenda. Yet, as the mother of two young children, I know it’s impossible to predict my child’s favorite lunchmeat in high school, let alone their gender identity or body preferences. Keeping this uncertainty in mind is something that parents can hold on to as they make their decisions, because make no mistake, taking the time to step back, rather than taking the path of least resistance offered by one’s medical professional, requires fortitude and a profound empathy for the person your child will become.
That’s why in parenting, as in medicine, my core philosophy has always been the same: First, do no harm.
This minimally invasive approach protects both intersex children, many of whom grow up with fraught family relationships due to the long term damage of their surgeries, and intersex parents, some of whom have lifelong guilt over the decisions they made to operate.
In 2006, the American Academy of Pediatrics issued the first consensus statement on the management of intersex. In a seemingly commonsense move, they recommended a multidisciplinary, whole-patient approach to treating intersex, and put the brakes on the rush to surgical correction. The statement emphasized the need for functional outcomes rather than cosmetic ones, and indicated that there is no good evidence to support the assumption that early surgery relieves parental distress.
A decade later, surgical intervention does appear to be on the decline overall. But it remains a common practice, despite being condemned by such international human rights organizations as the United Nations, the World Health Organization and Amnesty International. Thus far, the Society for Pediatric Urology—which met recently—has failed to suggest to its members that elective surgery be postponed until patients are able to participate in their own medical decision-making.
Until my fellow doctors can be trusted to provide parents with a full picture of the potential outcomes of surgeries that the UN considers a human rights violation, I must trust in my fellow parents to help turn the tide against surgery: If you are ever in the position to make a medical decision for an intersex baby, remember that the best parents make choices for their children that close the fewest doors.