Not informing patients of their DSD as they grow up can lead to psychiatric crises when they discover during puberty or adulthood what their parents and physicians haven't told them. Dr. Byne has treated a number of suicidal adults whose problems included a huge sense of betrayal after discovering their DSD history.
Although it is commonly believed that cosmetic surgery on intersex children in the first year of life relieves parental distress and improves the attachment between the child and the parents, there is scant evidence for this. Almost anything a surgeon does to “fix” a young child with DSD will interfere in the long run with the patient's ability to experience sexual pleasure, said Dr. Frader.
The “vast majority” of patients with DSD do have reconstructive surgery in the first year of life, said Dr. John P. Gearhart, professor and chief of pediatric urology at Johns Hopkins University, Baltimore.
Some surgeries are done for functional reasons (like ensuring proper urinary drainage to avoid infections), and others are done to make the baby “look normal,” he said. Dr. Gearhart called the birth of an intersex child “a true emergency situation” in an article he coauthored that has been criticized by other DSD experts (Urol. Int. 2005;75:291-7).
Dr. Reiner said, “I think most of the children are going to want surgery, but what surgery isn't clear.” The consortium's clinical guidelines recommend delaying surgery or hormonal treatment until the patient can participate in the decision, which usually means until puberty.
Others take a middle ground, saying evaluation must include assessment of the parents' ability to cope with the stress of genital ambiguity in their child. Some parents will demand surgery even when it is not being recommended. “I've seen it happen,” Dr. Reiner said.
Not informing patients of their disorders as they grow up can lead to psychiatric crises later on. DR. BYNE