Raising a Child with Ambiguous Genitalia

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.

Venkata Jayanthi, MD
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 and has been on the medical staff for nearly 2 decades. He is very passionate about education and often travels overseas on surgical missions, not only to help take care of children who otherwise would not get medical care but also to teach others how to perform complex reconstructive surgery. The members of the Jayanthi household are strong and vocal supporters of the Columbus Crew and Columbus Blue Jackets!

4 thoughts on “Raising a Child with Ambiguous Genitalia

  1. “Sometimes, however, it is not as clear, and it can be a very difficult call to make.”

    Why not leave it to the child to make at an older age? I wonder how many times the “team” gets it wrong and makes life unbearable for a child by assigning the wrong sex (and therefore societal expectations of gender) on the infant.

    1. I believe what he is referring to is assigning a sex of rearing, not necessarily a surgery or anything permanent. Society puts pressure on everyone to act “female” or “male” even if genitalia is typical. According to research and family advocates (www.accordalliance.org), it is preferred to assign a sex, but behavior is going to vary with everyone. A lot of hormonal tests are completed in the hospital to give a “professional” opinion, but ultimately the team works with the parents and it is a collaborative decision. The mental health providers discuss with parents the possibility of children transitioning in the future and transition is slightly higher in this population than with those with typical genitalia, but as of now, our society (USA) functions on he/she/male/female. Some people choose to identify differently when they are older to break these boxes (i.e. androgynous, gender queer, etc…). I believe there is a country in Europe (I want to say Germany, but am unsure) that has just announced a third sex for those that do not want to identify male or female.

  2. 1n 1959 they just flipped a coin, or asked the mother what she wanted. I was a coin flip. 50/50 chance of getting it right… it was wrong.

  3. AuBurney on said:

    If I was intersexed, I would prefer to wait til I’m old enough to choose a gender before they do surgery. If I want to be a boy, I can ask them to make me a boy. If I want to be a girl, I would ask them to make me a girl. If I want to be neither or both, I can just stay the way I am. Life’s hard for the child if you just choose a gender for them when they behave and want to be the opposite. The best thing to do is leave it until the child grows old enough to determine what sex they want to be. If they can’t decide, then, they might as well remain unisexed or intersexed. As long as their organs function properly, they should be fine. The most important things to consider is the child’s behavior, function, and desire.

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