My 21 year old daughter and I  have discussed it at length.  Yes! Get the whole surgery right away.  What we don’t understand is why wait? 

The doctors decided to give my daughter the "clitoral recession" at 9 mos old in which they tuck the enlarged clitoris back against the frontal pubic area and sew skin over it so it is somewhat disguised.  I’m glad they did this much but wish they had allowed me to opt for more at the time.  The healing and stress of the surgery seemed awful at the time but babies heal so fast that it was over before my memory could even store it effectively.  My daughter does not remember it.  I worried about all the financial issues involved for her.  I changed and cleaned and held her till she was well.  The emotional damage and psycological issues were not even comparable to what she has had to endure as an adult. 

The doctors explained their decision to wait for the rest of the surgery because it would be hard to keep the vagina open if she wasn’t sexually active and they would have to reopen it later causing more scarring.  That may be a valid reason to consider, but I’m not sure I buy it now that we have had it done. 

The additional problem for us was the large size of the recessed clitoris.  It was always large and got larger as she grew.  The young woman doctor who finally did the reconstruction seemed shocked at how much tissue she removed.  We always knew it was large because it formed a lump underneath her front pubic area that made her look just like a large man in normally snug clothing and made her appear very odd nude.   I know she was not terribly undersuppressed as she grew up because everything else grew pretty normally.  I took her regularly to the best endo we knew at a big childrens and  university hospital, her blood levels were always kept good.  

She looks very much like a girl with a nice figure if she keeps her weight down, which she does a pretty good job of under the circumstances.  She is funny and active and keeps lots of freinds both boys and girls but has never felt free to let herself indulge in a romantic relationship for fear of being seen or getting to a certain point without any normal female genitalia. 

She has watched her sister and most of her friends get married and now even having children.  She finally got the courage to pursue the doctors herself.  It has been very hard for her because she is naturally pretty reserved and has to insist to several strange doctors that she is not gay and wants to have a normal sexual ability even though she is not presently involved that way (yes, they do ask her those questions to her great embarrassment). 

She had to wait until she had a job with good insurance which will cover the proceedure.  (She also has had extensive trouble with bladder infections and now IBD.)  Now that she is in a job she has had to take an extensive leave without feeling comfortable telling the whole truth to her super and co-workers.  There have been mild complications and infection so she is off more that the 6 weeks and finances have become an issue along with health insurance ending.   Her IBD has flared up because of the antibiotics.  (We suspect the IBD is a result of a life long regimen of steroids) Getting IBD back under control is an issue.  

Along with the prolonged physical stressors now she has all of the emotional, psycological stress of being an adult, feeling trapped in my home (she doesnt live with me usually), wondering if they will hold her job, who will pay her medical and car payment, and how much to tell her friends.  I am changing bandages which would have been more comfortable for her to endure when she was at diaper changing age. 

Thank God he allowed me to live long enough to see her through this.  What if I had died and she were left alone to find her way?  I’m sure she would make it but I feel it is my responsiblity as her mother to get her set out on life with as much a whole body as I can.

I keep reading these boards about "should the girls be given surgery at infancy" and can’t help comparing it in my mind to something like a cleft palate.(sp?)  When a baby girl is born with a hole in her palate that connects her nose and mouth it sometimes isn’t even a health problem yet no one hesitates to repair it immediately when she is old enough to have the surgery so that her self-image will be healthy as she grows up.  Why do we treat genitalia differently? 

Genitalia is not as unimportant as we assume.  There is a point in life when we begin to think a great deal about it, long before we grow up, and often before parents are willing to think that their sweet little girls are thinking of themselves as sexual beings.   I believe a girl’s emotional sexual growth begins somewhere around 8 or 10 years old.  From that point on, if your daughter has a "penis" instead of a clitoris and knows that other girls don’t, it doesn’t matter what you say to her,  she will be affected.  We are all maimed in some way growing up.  I am not a victim, nor did I raise wimpy children, but I do believe in fixing what is broken when I can.  If we can’t we don’t let them feel sorry for themselves, but if we can...then fix it.

I think this is one thing we should fix if we are able.  My problem is that I am not a doctor, I do not have the experience of seeing a girl grow up who did get it fixed and I don’t know if there are real issues that would make it wiser wait like we did.  My enthusiastic "yes!, get all the surgeries for her now"  is qualified by my not knowing more than what happened to us.   I don’t believe the doctors who made the decision for us  took all things into consideration.  I know they only think about scar tissue,  physical need balance with risk and outcome, practicality, and it appeared that they were making our decision from what they had read on the subject of virilized girls and repair, not from experience.  I believe they have limits in their ability to know what is best for us, like we all have limits.

I only offer our story because I hope it helps add another dimension to the picture that forms your decision.  Be gracious with yourself, whatever you decide.  You will do your best.  No one on earth will ever love her as much as you.