New clinic addresses intersex and gender issues

On February 23, a new multidisciplinary clinic at Children’s Hospital Boston’s saw its first patients with what are called disorders of sexual differentiation (DSD). The program primarily serves infants, children, adolescents and young adults with genitourinary or hormonal disorders or other medical issues that may make it difficult to determine their sex, and that may interfere with sexual and reproductive function. Girls with congenital adrenal hyperplasia (CAH), for example, are overexposed to masculinizing hormones in utero and may be born with the genital appearance of boys.

While Children’s has long treated the physical manifestations of DSDs, the new clinic is also designed to address psychosocial issues that may arise from genital and gonadal variability. In addition to urologists, endocrinologists and geneticists, the team includes social workers, nurses who have run support groups and a research psychologist.

In the past, DSDs were regarded as medical emergencies that needed to be addressed immediately. Parents were not always involved in the decision-making process, which varied from center to center. In recent years, however, adult patients have formed national advocacy groups that have changed the thinking about how to manage DSDs, and today, families are intimately involved in the decisions.