Congenital adrenal hyperplasia (CAH) occurs in around 1 in 10,000 infants, and can have a variety of potentially serious effects, including dangerously low blood sodium. In girls, it can also produce ambiguous genitals — and later in life, some experts believe it predisposes them to masculine behavior, lesbianism, and a disinterest in having children. To prevent these effects on genital anatomy and gender expression, some doctors identify pregnant women at risk of having a child with CAH — usually because they’ve had one before — and give them the drug dexamethasone (dex for short). But recently-released research suggests that the drug may actually be harming fetuses, and some are questioning whether it really does any good.
A Swedish team recently published research showing that out of 43 children treated prenatally with dex, eight had serious medical problems, including mental retardation and mood disorders. This finding contributed to the team’s decision to stop giving dex to pregnant women. But some doctors in the US, most notably pediatric endocrinologist Maria New at New York’s Mount Sinai Hospital, continue advocating for prenatal dex — Anne Tamar-Mattis, coauthor of a new report [PDF] on the drug’s potential dangers, says New is telling moms the drug is safe, when there’s evidence it may not be. She also says there may be no need for dex: “there’s no evidence that atypical genitals cause any harm at all.”
That argument resonates with Thea Hillman, author of Intersex (For Lack of a Better Word). Hillman was born with CAH, and was treated with dex, but not prenatally. It’s an important distinction — administered in childhood, dex can help with some problems like abnormal skeletal growth and early puberty, but prenatally, it does none of these things. Hillman says the difference between her treatment and prenatal dex was that “it was done to address medical issues, not to normalize me in terms of gender or sexual orientation.” She worries that New and other doctors who prescribe dex prenatally are “not addressing the medical condition — they’re trying to make typical girls, girls that are straight and want to have babies, girls that act normally.”
In response to BuzzFeed Shift’s request for comment, New provided a statement written by Mount Sinai’s press secretary stating that a 2010 investigation into New’s work “found complaints against her to be unfounded” and that she “continues to work toward improving the quality of life of patients with congenital adrenal hyperplasia.” New also told a Daily Beast reporter in 2010 that “allegations that my goal is to prevent lesbianism are completely untrue.” But a 1996 grant application by New, uncovered by Tamar-Mattis and her team, does seem to support some of Hillman’s fears. In the application, New listed “tomboyish behavior” and “increased adolescent/adult bisexuality and lesbianism” among the potential effects of CAH. The application also states that “genital abnormalities and often multiple corrective surgeries needed affect social interaction, self image, romantic and sexual life, and fertility. As a consequence, many of these patients […] appear to remain childless and single. Preventive prenatal dexamethasone exposure is expected to improve this situation.” And as recently as 2010, New was advocating dex as a prenatal treatment for “behavioral masculinization” in girls with CAH, including an interest in traditionally masculine careers.
Hillman says her genitals were typically shaped, so she wasn’t at risk of surgery. But they did “look different” — she developed pubic hair at four years old. She did go on to have a child, three years ago — there’s some debate over whether CAH affects fertility, but many women with the condition are capable of getting pregnant. She does identify as queer, and says, “I wouldn’t want a treatment that was aimed at making me straight.”
Nor would she have wanted any surgery to change her appearance — and, she says, most people with intersex conditions that she knows would agree with her. “I know folks who have very different-looking bodies,” she says, “and it hasn’t inhibited their ability to have relationships, their ability to have families.” What has harmed people have been changes to their genitals performed without their consent: “many of the folks I’ve known who have had surgery or interventions have become suicidal, many have not had successful relationships,” because their parents’ decision to change their bodies without their agreement hampered their ability to trust people. Of the hundreds of people with intersex conditions she’s known who had nonconsensual interventions, she says only one is happy with the results as an adult — and even he wishes his parents had communicated with him better about what was going on.
Tamar-Mattis says New may well be responding to the concerns of parents themselves: “parents are very distressed when their daughters with CAH are born with atypical gentials, and they want to protect their kids” from ridicule. But Hillman says the way doctors talk about intersex conditions can influence how they respond to them: if the conditions weren’t “presented to parents as an emergency,” they might not demand interventions like dex, that could have serious side effects. If doctors offered counseling to help parents and kids deal with anatomical differences, or contacts with adults living with intersex conditions, then something like dex might no longer seem as necessary — for an informed parent, says Hillman, “it might not be worth the risk.”