Dear Fiona,

Hi, my situation seems much different than most because the genital part was never hidden or not talk about but rather was just another ingredient in growing up. I was lucky that I knew what I looked like because the surgery was done at age five. I’m forever grateful to my parents and the teaching hospital it was done then instead of earlier and then tried to keep secret.

For someone else maybe the earlier surgery is better and having their parents tell them about it later is better. There are no right or wrong answers. I don’t have kids and I’m so glad that I never have to make a decision like this.

I’m glad that my parents could talk with me because I would of felt betrayed if they had a psychologist explain the surgery to me instead of them. It would of made me feel separate from them and my gosh if my own parents can’t talk about it then this really must be terrible.

My parents told me what they knew and were matter of fact about it. They never let me dwell on it but they answered the questions that I had if they could and OK lets get on with life. I liked what I was born with and thought it was neat. I wasn’t confused or embarrassed yet I instinctively knew it wasn’t quite right not that I wasn’t right but the body part wasn’t right and something had to be done.

The clitorectomy that was done isn’t good but leaving me with what I was born with would of been worse and you would think that even in 1975 that a Harvard trained surgeon would have something better to offer (smile) but on the other hand the vaginoplasty was excellent even without a labia minor it still looks good. As a kid,  I realized that medicine can’t fix everything but I also knew that other kids with different conditions on that hospital floor were a lot worse off than me. I was a goofy kid but I also understood some very serious issues. I believe that is part of being born with and managing any birth defect.

I don’t know your child but I can relate to being body shy especially if she she being used for teaching purposes and pictures. Things like that change you and I wasn’t a naive little girl. There is a chance that if your daughter is subjected to genital exams that she might already be connecting the dots about what happened. I have faith that it is going to be better for this generation and if the surgery looks good to your daughter and there is feeling there then just maybe she will be fine with why it was done.

I don’t know the right age to tell her but when you do, PLEASE tell her in the most positive voice you can muster. I like to compare it to other body parts and just because it’s the genital area doesn’t make it special.  I was dating a medical student (yes, I’ve dated the enemy (lol) ) he was telling me that no matter where someone has a condition and it could be anywhere the jaw, the back etc. that they feel uncomfortable about being viewed or that they have something different about them. You could first explain to your daughter about all the other body parts that when someone is born might have something the matter with them. Tell her about family trees and how conditions are passed on through family genes. Think about all the kids that are born with heart or limb problems and then explain how the cortisone she take replaces the cortisol that her body never made but the cortisone makes up for it PLUS IT KEEPS HER ALIVE and also tell her about hormones that everyone has in their body and if one hormone is missing then the other hormones mainly the wild and wacky androgen is going to form her body on the outside different from other girls and Mommy and Daddy love you and wanted you to be happy ....the surgeons wanted to help you and we had surgery when you were a baby to help you look like other girls and to do things that girls do when they become teenagers like menstruation. She might go "OK,  Mommy" and develop an interest in science or become depressed and become a song writer. You never know about any of this but you do the best that you can.

 Aimee