Hi Heather,

I am a mom, and I learned my info by doing the same thing you’re doing (researching and reading all I could).  Here is what I have learned.  I am not a doctor or in the medical profession, but as a parent this is what I found.  If you would like more info than what I have listed below, ask Kelly at CARES if she can fax or mail you a page on it.  She found something for me on it once and I am typing you part of what she faxed me.

The Prader classification scale tells the different degrees to which female Salt Wasting CAH girls can appear to be virilized.  It is my understanding that the Prader Classification scale is used to determine varying degrees of virilization in other conditions as well.  Your daughter’s urologist will tell you what level she is.  From what I have been told by several urologists, it is most common that SWCAH girls are a three or four, with two following, and levels one and five are pretty rare.  Level zero is a non virilized girl (normal), level one is a mildly hypertrophied clitoris, level two is a mildly hypertrophied clitoris with a urogenital sinus at the base of it, and no visable vaginal opening.  Level three is same as above plus slightly larger clitoris with some fusion of the labial folds as well as hyperpigmentation of labia (darker color and wrinkly texture similar to scrotum), Level four is same as level three with more hyperpigmentation and fusion of the labial folds and the urogenital sinus might be located anywhere from the base to the middle of the clitoris.  Level five infants might appear completely male without the appearance of testicles in the scrotum. 

Hoping to have been of some assistance to you.

Good luck,

AdinaH