Hi Jaime,
We agonized over this decision but we feel we have made the right one for our daughter. I cried every day when I thought that we would have "the surgery" = reduce clitoris. When I cancelled the surgery appointment I felt much peace. My little girl will be three in April. We decided not to do any surgery yet. It is all cosmetic at this point. Research shows that the surgery usually needs to be redone. Every time a cut is made scar tissue forms and scar tissue doesn’t stretch and can cause stenosis. I know that my daughter has not had any infections because of this and we too were told she would. We decided to wait and see and she has had no complications. She has fused labia and an enlarged clitoris. I haven’t really measured it but it definately gets erect and when she bears down to go to the bathroom it pops out. She will need surgery to seperate the labia pre puberty (we want to wait until then as research indicates that at this time her body will produce more estrogen helping to keep the new opening pliable and able to stretch. I believe in being honest and open and presenting information age appropriately when she is ready to hear it. She has already compared herself to myself and come to the conclusion that we look different to which I commented that everyone looks a little different and that some girls/women have little clitorises and some have big clitorises. This satisfied her. Just today she was pretending to be pregnant with a stuffed animal in her shirt and pushing and giving birth to the baby (oh yeah, first the baby kicked!) I used this opportunity to tell her that usually a woman has a hole that the baby can come out of and that the doctors will have to help her so she can have a hole, too. Something to that effect I don’t remember my exact words but they were in vocab she could get. Whether to have surgery on her clitoris, well, she will ultimately make that decision and we will support her decision. I want her to fully understand the possible consequences. It’s hard to think of her as an adult with sexual feelings, but I have to think of her as a sexual being. Aren’t we all? Also, this surgery is not reversable and medical improvements may come about in the next years, who knows?

I found it interesting that in the new guidelines for care of people with CAH that CARES foundation helped bring about talk about surgery and they only recommend it before 12 months or waiting. You can find the guidelines I’m referring to at CARESFOUNDATION.org (I think, I’ll check). I know how tough this is. Some days I still question myself on this but I know my daughter has a strong personality and would want to be involved in such a huge decision about her body that may possibly affect her for the rest of her life.

About the cleaning part, can you seperate the labia and use a wipe and clean the areas? I’ve noticed sometimes my daughter needs to be cleaned there and when she’s old enough to do it herself we will teach her. They say the same thing about infection and foreskin and use that as an excuse to perform circumcision. However, I know many men and boys who clean properly and are just fine.

The decision is the hardest thing I’ve ever gone through in my life. There is no easy answer. But I liked Danny’s thoughts for those who said that growing up with a large clitoris, won’t the girls think they are boys? He said something like, using that logic then people with big noses must be elephants and he posted pics of poeple with large noses. I also talked with my sister on the subject of questioning this decision. She is an ob/gyn nurse and has seen many women and says we really do come in all shapes sizes and colors. This is a very personal decision, I am telling you my thought process as you asked to hear from anyone who was battling the same thing.

Take care and I wish you a peaceful conscious with your decision. Whatever you choose, I sincerely hope it feels right to you. I know how horrible I felt when I almost made the wrong decision for us. Julia