A mother of two intersex daughters tells parents how to deal. by Meghan Pleticha
April 17, 2009
So going off that, what would you say is the most important piece of advice for parents whose children have DSD? Is there a rule number one they should follow?
Just love, love, love your child. Be open. You know, you’re setting the tone for the rest of your child’s life and if your family is open and accepting, then your child will grow up knowing that he or she is accepted, that having a DSD is not a big deal, that it’s just something that is, and it’s fine. I do have one piece of advice: You have to be your child’s advocate. You have to go with your own gut feeling of what is right, because doctors don’t necessarily have a lot of experience with this, and a lot of times the parent knows better than the caregiver.
Is there a relationship between DSDs, gender and sexual orientation?
People like to focus on that, and it becomes a big concern for parents, but there really is not. There are very few people who don’t feel as if they are male or female, regardless of what else is going on with them medically or physically. Children with DSDs will all get assigned a gender of rearing, and the parents should be told, “You have a boy” or “You have a girl.”
How is that gender assignment determined?
Dr. Baratz and her daughter Katie on Oprah. The considerations are the appearance of the genitals and what gonads the child has, and what kind of hormones those gonads are making. A girl with AIS is a girl even if she has XY chromosomes and testes- there’s no way she could be anything else! You know if a fetus’s brain is exposed to male hormones, there’s going to be some sort of masculinization of the brain. And you want to think about that. You cannot just make a boy into a girl; that was a mistake that was made not that long ago. You know if a doctor looked at a baby that was XY, had a small penis and testes, that doctor would say “That penis is too small to have penetrative intercourse, this is not a boy.” And doctors would try to surgically create female genitalia and remove the testes and give them estrogen, but those children did not feel like they were girls necessarily. And after this drastic intervention, parents were advised never to tell them what had happened. And those were the children who grew up and never felt that things were right and felt like strangers in their own bodies.
At one point didn’t they have a phallometer that they use to measure the phallus, and if it was a certain length it was a boy, and if what less than that it was a girl?
Yeah, absolutely true.
What do you think is a common mistake people make when discussing DSDs would be?
I think that they think those children are transsexual or transgender – I should say transgender or that they’re the wrong gender. Everybody wants to make it about gender when it’s not about gender at all. That’s the problem that we really have, it’s just about being a different kind of a person.
Of course, we have to ask: what was it like being on Oprah?
Wow. She’s fabulous. She’s very kind. Oprah’s kind of a high priestess in our culture. If Oprah says it’s okay, it’s okay. And for her to say, “Look, we have to think about these people and accept them,” it really opens a lot of eyes. And I think that people in the community of parents whose children are affected by DSDs – you’re always worried about your child’s privacy, you always want to protect your child, and to know that this is on national TV, and millions and millions of people saw it and how they see young adults with a DSD, and for them to see that she is a great kid, has been very freeing.