When my wife was pregnant with our three children, we chose not to know the sex prior to birth because we wanted it to be a surprise. It was one of the greatest joys in my life when I announced to the world that my son and daughters were born. But what should be a simple announcement can be quite a problem when a child is born and we cannot tell if that child is a boy or a girl.
These situations can be very traumatic. Families require a lot of emotional support as the medical professionals work with them to make a decision regarding sex of rearing. Most of the time, this process is straightforward and we know the sex of the child after some preliminary tests. Sometimes, however, it is not as clear, and it can be a very difficult call to make.
For children in this situation, a team of specialists, including urologists, endocrinologists, geneticists, psychologists and social workers, should work with the family to jointly come up with a decision. Even after this initial decision is made, further complex decisions need to be made, often regarding whether any type of surgery is needed and what the long term expectations might be.
Questions most parents of newborns don’t have to think about are brought to the surface. Will my child have a normal sexual life? Will my child be able to have children? How will the look of my child’s genitals affect him or her throughout life?
Raising a Child with Ambiguous Genitalia
Past these initial difficulties, parents often struggle with the idea of disclosure — not only to family members and potential child care providers, but to the child. When do you tell a child that he or she was born with a-typical genitals? How do you tell a boy that he was born with a uterus? How do you tell a girl that her clitoris looked like a penis when she was born? How do you tell a teenage girl that she has not started her menstrual cycles because she has no vagina or that she has testicles instead of ovaries?
It is hard enough for parents to talk about “the birds and the bees” without adding the complication that they did not know if the child was a boy or girl at birth. Understandably, many parents avoid this discussion and put it off as long as possible.
However, children these days know much more about sexuality and at an earlier age than when I was growing up. It is clear that what causes a lot of emotional distress for children and teenagers is when they realize that something is not quite right but that no one is being honest or forthcoming with them.
As parents, our job is to help our children to grow up to be emotionally healthy, independent adults. As medical professionals taking care of children with complex atypical sexual organs, we need to not only treat the child but also work with the parents and family as the child gets older.
The THRIVE program at Nationwide Children’s Hospital emphasizes education and emotional support. Our team of behavioral health specialists can assist families with issues as they arise and work with parents to determine the appropriate language and best time to have those tough discussions with their child. We don’t want to repeat the mistakes of the past, when children and families did not receive proper education and emotional support.
As a surgeon dealing with these complex issues, I strongly believe that one of the most important factors in fostering a child’s emotional well-being is access to high-quality behavioral health specialists like those in our program.
Rama Jayanthi, MD, is Chief of the Section of Pediatric Urology at Nationwide Children’s Hospital and a Clinical Associate Professor of Surgery in the Department of Urology at The Ohio State University College of Medicine.
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