Jessica,

You are absolutely right to do what you did. My husband’s family are still in denial about CAH and our twins are 18 months old. They told him just last week that we make up this disease so that they don’t get to see them. They said this because we wouldn’t let them visit when they were ill and also because we don’t let them go there and stay for a week. They have refused to learn about CAH and since they have never heard of it, insist that we are lying. Just because you asked your family members to support newborn screening doesn’t mean that you were exposing her genitalia to the world.

Tons of people know about my girls’ condition but not to the extent of the genitalia. Even when they had surgery, we said it was to correct urinary and reproductive issues so that things would work later on (menstruation, fertility,etc). I agree with you that I am happy they were born with ambiguous genitalia as they would have sent them home (3 hours away) and they probably would have died.

Your mom and sis need to study this disease some, maybe come to this website and educate themselves, because this is a condition your daughter will always have and they need to realize that. They can’t treat it like a dirty secret or your daughter will think something bad is wrong with her.

Cassy