WHAT CAUSES DSDs?

Your child’s doctors may be able to tell you about why your child’s DSD happened, so be sure to ask them. We can tell you this in general: Sometimes a DSD happens because the child has something other than either the XX or the XY chromosome pattern. So some children have XXY, and some children have different combinations in different cells of their body. (That’s called a mosaic karyotype.) Another way a DSD can happen is if a child is missing a common gene (part of the DNA), or has an uncommon combination of genes that make his or her body develop differently from most boys or girls. This can happen because of genes passed down through families, or because of a genetic change that happens by chance. Much more rarely, something happens to the mother during pregnancy that leads to a DSD; for example, on rare occasions a pregnant woman may be exposed to chemicals that can affect the sex development of her child. Sometimes we just don’t know why a DSD happened.

You may find yourself in the situation where the cause of your child’s DSD is simply not known. That can be uncomfortable, but it does happen. Why do parents like you often long to know the cause? Sometimes it is because they want to make sure the diagnosis is right. And sometimes it is because they feel guilty and mistakenly believe they are somehow to blame.

You may find that well-meaning medical professionals, family members, or friends accidentally make you feel guilty that your child has a DSD. These feelings can become overwhelming, depressing, or confusing. It can help to speak these feelings out loud, to tell people when you are feeling guilty, and to remind yourself and them that you are not to blame for your child’s DSD. Talking about these things gets these feelings out of your head and out into the open, and allows you to see and think more clearly.

As your children grow, they will be learning from you about how they should feel about themselves. It will help them tremendously if you can find a way to show them (and yourself) that you do not blame yourself for who they are, because they want you to accept and love them for who they are.