A mother of two intersex daughters tells parents how to deal. by Meghan Pleticha
April 17, 2009
Is it a boy or a girl? If your baby is born with ambiguous genitalia, your doctor might not be able to tell you right away. But don’t expect to hear the term “hermaphrodite” – the new name is “Disorders of Sex Development” (or DSD for short). Children with DSDs have atypical sex chromosomes, gonads (ovaries and/or testes, or unusually developed genitalia, and one in 2,000 children are affected.
Dr. Arlene Baratz is a physician, DSD advocate, and the mother of two grown daughters affected by androgen insensitivity syndrome – a DSD in which a child has XY chromosomes and testes, but her body is immune to male hormones so she develops and grows up as a girl. Dr. Baratz’s work with The Androgen Insensitivity Syndrome/ Disorders of Sex Development Parent Support Group (AIS/DSD Parents) landed her and her eldest daughter Katie on Oprah, where they discussed va-jay-jays and growing up intersexed.
She is also a family and medical adviser for the board of Accord Alliance, a new DSD advocacy organization established in March 2008. Dr. Baratz talked to Babble about raising two DSD kids, what determines if you’re a boy or a girl, and how to get your kids to love the bodies they’re in. – Meghan Pleitcha
When your daughters were born were you already familiar with DSDs?
We had a lecture on what were called “intersex conditions” when I was a medical student, and I remember learning about AIS, which is the abbreviation for Androgen Insensitivity Syndrome. We did not learn about our daughters’ AIS when they were born. We found out when our older daughter Katie had surgery to repair a hernia when she was six, and luckily we had a wonderful pediatric surgeon who operated on her, and he was thoughtful enough to check and see if there was a testis in the hernia. In one percent of girls who have an inguinal hernia in the groin, the cause is AIS. And because it can run in families, he suggested that our other daughter be checked. She was four and Katie was six when we discovered they both had AIS.
Wow. What kind of reactions and advice did you get?
Well our medical experience was actually excellent. We had a professor of pediatric endocrinology from medical school who became our physician, and he was very supportive and helpful and told us the girls would be healthy and completely female. He was not so knowledgeable about what happened to these children when they became adults. So I always had questions about that, and I wanted to meet other families who were dealing with a similar situation but he couldn’t introduce me to any other families. Which was lonely and tough.
Do you think that’s a common experience among parents when their children are diagnosed?
Yes. I’m a member of a group that has about 85 parents and our name is the AIS-DSD Parents Support Group. And the vast majority of these parents have never met or spoken to someone else who’s in the same situation before they join the group.
So when then did you begin to talk about DSDs with your two daughters? Was it immediately after the diagnosis? How did that go?
I did start talking to them right away. I wanted to make things positive for them; I thought that they should have the expectation that they would have families if they chose by adoption, so I really tried to focus on healthy things about different kinds of families, and just in general on ways to feel good about themselves.
How do very young children process information about their bodies?
Very young children – toddlers – have questions, but they accept differences. If a child says, “Why does my private look different from somebody else’s?”, and you say to them, “Well you know some people’s private parts just look different from others,” they can accept that. And they’re very concrete, they don’t require a lot of explanation at that point.
If they perceive that there’s something negative about their genitalia or something else about themselves, they can absorb that. So it’s important not to dwell on it, to just talk about it as things come up so that they can develop their self-identity as they get to the pre-k years. They’re also developing their gender identity at that age, and they’ll have their parents as role models, and I think you just have to be very matter-of-fact about it: some people are this way, some people are that way, you are different, we love you, let’s have dinner.