Helping Patients and Families
Through Key Transitions

From the moment we are born we are flooded by the many ways society sorts us into one of two genders, such as blue for boys and pink for girls. The first words new parents usually hear from their doctor is a resounding, “It’s a boy (or girl)!” But for approximately 1 out of 2,000 babies, this distinction cannot be clearly made. Parents are then forced to make an educated decision as to whether their baby will grow up as a girl or as a boy.

“The term intersex is used for babies who are born with genitalia that do not clearly identify them as a boy or a girl,” says Arnold Coran, M.D., Pediatric Surgeon-in-Chief and Professor of Surgery. Because of abnormalities in the chromosomes or sex hormones, or how the baby responded to hormones during fetal development, genitalia or reproductive organs don’t always develop normally.

Josephine Kasa-Vubu, M.D., Assistant Professor, Department of Pediatrics and Communicable Diseases, says, “The intersex condition is so unique because there is no mold that fits all. Each intersex case is very individual.”

How Is the Sex Determined?

Approximately five to seven intersex babies are born at the University of Michigan C.S. Mott Children’s Hospital per year. When this happens, a pediatric surgeon, a pediatric endocrinologist, and a pediatric urologist come together to determine what would be best for the baby.

First, the baby is diagnosed. The doctors determine what caused the genitalia to develop abnormally and genetic testing is done to determine the presence of a Y chromosome, meaning the child is genetically a male. Also, X-rays are taken to see what, if any, reproductive organs the baby has internally and blood tests look at the baby’s hormone levels. This information guides doctors in making their diagnosis. After diagnosis, the team carefully weighs the baby’s options, which sometimes involves assessing how well a child will be able to function in years to come. Recommendations are then presented to those who ultimately make the gender decision—the family.

“The belief is that gender should be assigned to a child by 18 months of age, so that normal gender-rearing practices can begin,” says Coran.

Treatment for intersex patients can involve surgery, hormone therapy, or both.

The delicate issues surrounding intersex patients do not stop when the gender decision is made. Parents and patients continuously have questions, and problems do arise, especially as childhood milestones unfold as well as during adolescence. That’s why Mott Children’s Hospital has designed a Multidisciplinary Pediatric Intersex Clinic (M-PIC) to help intersex patients and families deal with those post-decision problems.

Medical Help Plus Mental Well-Being

M-PIC runs quarterly per year under the direction of Kasa-Vubu, who is a pediatric endocrinologist, and John Park, M.D., Chief of Pediatric Urology. M-PIC is focused on both physical and mental health for the intersex patient and family. Depending on a patient’s needs, the clinic is opened to several disciplines: pediatric endocrinology, pediatric surgery, pediatric urology, pediatric gynecology, and psychology. Having different disciplines available for patients makes it a one-stop complete care clinic at times when several issues need to be addressed together. Its mission is to provide this comprehensive care to children with intersex disorders from birth to 21 years of age to assist patients and families through crucial transitional periods of life such as preschool entry, middle school and puberty, high school, and the start of adulthood. The goal is to give medical help along with mental well-being, if necessary.

“Intersex patients and families must rethink their situation at each new milestone, and so it’s important to discuss with them what exactly will or won’t happen and also to be open about questions that are still not answered,” says Kasa-Vubu. “The clinic’s main goal is to assist each child in his or her journey to become functional, happy, adjusted, and developed physically and psychologically.”