Medical treatment of intersex: parental perspectives

The recommendation for early genital surgery in children born with ambiguous genitalia has become a contentious topic. Some adult intersex patients contend that their parents were neither fully informed about the side effects of surgery nor able to predict the impact of these surgeries on sexual responsiveness. The parents of these intersex patients, on the other hand, often report that they were not given sufficient input into the treatment decisions for their children.

A total of 21 parents of 17, 46 XX children with congenital adrenal hyperplasia (CAH) and genital ambiguity completed multiple response questionnaires to gain a better understanding of parental perspective to include information provided in the neonatal period, the specifics of genital surgery and their recollection of the participation they were allowed in medical decision making for their child.

The majority of parents of girls with CAH were satisfied with the information provided in the newborn period, and with the preoperative discussions and outcomes of the genital surgery their daughters underwent in infancy. Most thought that their daughters would lead a well-adjusted life.

Most parents of minor females with CAH who were born with genital ambiguity indicated that they were well informed and involved in the medical care given to their daughters. In most instances parents indicated that genital surgery was indicated during infancy and should be undertaken even at the risk of reducing genital sensitivity.