Magazine article Clinical Psychiatry News

Ambiguous Genitalia Management: It Takes a Team

Magazine article Clinical Psychiatry News

Ambiguous Genitalia Management: It Takes a Team

Article excerpt

It's one of the first things that parents want to know when a baby is born: girl or boy?

When the answer isn't clear, physicians walk into a mine field of choices that could have lifelong repercussions for the child and the parents.

Psychiatrists, psychologists, and social workers today play a much bigger role--and surgeons less of a role--in the care of people with disorders of sex development, compared with past management practices.

"I think the field has revolutionized in the last 10-15 years. The impetus for that largely came from patients themselves," said Dr. Joel Frader, a pediatrician at Children's Memorial Hospital and Northwestern University, Chicago.

The revolution is still in progress, with a bit of chaos in the streets. A dearth of research data to inform guidelines leaves clinicians with little to follow besides opinion-based consensus statements and their instincts.

"Because the ultimate outcomes are unpredictable from our standpoint, there is no standard of care. We don't really know what to do clinically. We're not sure what to do psychologically. Yet mothers and fathers have to go ahead and raise their child. It's a very difficult situation," said Dr. William G. Reiner, a psychiatrist and urologist who is director of the psychosocial development clinic at the University of Oklahoma Health Sciences Center, Oklahoma City.

Some key points of agreement, however, inform current practices: Don't rush to surgery. Integrate psychological care for the family and the child. Consult a multi-disciplinary team (preferably at an experienced center) that may include a pediatric endocrinologist, pediatric urologist or surgeon, gynecologist, child psychiatrist or psychologist, geneticist, neonatologist, social worker, nurses, and medical ethicist if needed. Be honest with parents and patients. Emphasize functional rather than cosmetic results in any treatment. Make management patient-centered and consider the long-term physical, psychological, and sexual well-being of the patient.

"The single biggest change is our recognition that the infant born with anomalous genitalia is a real, live human being, not a blank slate," Dr. Reiner said. "We have no idea what that child is going to be like at age 5, or 15, or 50."

A decade ago, Dr. Frader recalled, training manuals and textbooks for general pediatricians or pediatric endocrinologists referred to the problems now called disorders of sex development (DSD) as psychological emergencies.

"That sets a very inappropriate tone. There's nothing emergent in 99.9% of these cases," he said. A small minority of babies with congenital adrenal hyperplasia will have life-threatening endocrinologic disturbances that have nothing to do with the appearance of the genitalia. "So there's never a surgical emergency," he stressed.

Dr. William Byne, a psychiatrist at Mount Sinai School of Medicine in New York, added, "If there's a psychosocial emergency in the delivery room, a mental health professional should be brought in. The birth of an intersex child is rarely a medical emergency. We should not rush to make irreversible medical decisions at a time of crisis."

Unfortunately, he and other experts agreed, there are not enough mental health providers trained to handle DSD.

Dr. Byne, Dr. Frader, and Dr. Reiner contributed to the 2006 Clinical Guidelines for the Management of Disorders of Sex Development in Childhood, which was produced by a consortium of clinicians, patients, and parents and published by the Intersex Society of North America (www. …

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