My 11 wk old daughter has Classic CAH, they are still not sure if it is salt wasting or not, although they assure me that they would be very surprise if it was.  Then again I was told 3 out of 4 people with Classic CAH are salt wasters. I just spent a very scary week in the hospital with my daughter who had RSV, what’s worse is we did not get the diagnosis until our third day into the hospital stay.  The state I live in screens for CAH but she was missed.

When she was very new (about a week old) I noticed that her clitoris was very large. Now I know that a female baby’s genitals are swollen for a few days after birth, but this was just not normal.  I ask my pediatrician if he thought is was abnormal, all he was worried about was the little bit of extra fusion that she had. When I went to get a second opinion, my worries were confirmed.  In fact the doctor was very concerned with the size and referred me to and endo ASAP.  Has this happened to anyone else, I just hate to think that this happens very frequently. We very well could have lost our daughter due to a doctor not being thurogh enough, and I trusted him because he is board certified and he has been practicing for more that 40 years. I hate to think of others he may have missed over the span of his career.

I would also like to speak with anyone who can tell me a little bit about living with an enlarged clitoris and a small vaginal opening so I know what to expect when my daughter is older.  I want to be very open with her and let her know what I have learned so that she can make decisions that will not haunt her for the rest of her life. My parents are pressing me to get her clitoris surgically altered so she will be "normal"  I want her to make that decision on her own.  Anything anyone can share with me would be great, I want to be a knowledgable as I possibly can.  Feel free to e-mail me at elocin_twenty@hotmail.com.  THX

Nicole