Mel, What area do you live in?  We too have a SWCAH daughter diagnosed at birth due to severe verilization.  She is now 11 yrs old and while she has been in adrenal crisis over the years a handful of times due to other viruses/illnesses she is other wise a very healthy girl.  She knows all about surgery and the issues regarding the controversy.  She wishes to tell parents that she is very happy with her "procedures" and how much they changed her life.  When she was 18 months old we as a family decided to have the first surgery (a vaginoplasty and clitoral recession done together) due to an enlarged clitoris and the fact that she didnt have a vaginal opening.  It was a pinhole basically.  The other problems, which we didnt have corrected at the same time, mainly because we didnt know it was a problem, was that after she was potty trained we figured out she "sprayed" when she urinated (what you dont see when they have a diaper on of course) and that she was having trouble even getting it out, she had to strain.  The pain, not to mention bacteria that the backed up urine caused such as urinary tract issues caused from not emptying the bladder and pooling urine in the vaginal canal.  

When she was finally sick and tired of pain and leaking she herself told the pedo urologist exactly what she wanted.  We took her to the best in the country that we knew of to make sure that everything there was done correctly and nerves were preserved for later use...  We recommend Dr. Dix Poppas head of Pediatric Urology at Cornell Medical Univ Hospital in NYC.  We will always be happy with the decisions we made for her and she will tell you she is also happy with the ones she made for herself.  Ours is an case by which extreme verilization was involved.  I think if they are not functional we should fix it if we can.

Heres a message from my daughter: Hi! My name is Alyssa and I have SWCAH as you already know. I wanted to tell you guys that I could’nt even talk let alone make my own decisions at the age I had my surgery, but if I could talk I would of said yes.