I have a 4yrs old son with CAH, I also have a second cousin who has it. She is about 30 now. When my son was diagnosed with it I called her mother just to talk. I was surprised even at that early stage how much more I knew about it than she did. Much has changed through the years. She told me how the doctors had taken her baby from her at a couple of weeks old because she insisted something was wrong with "him", sent her home and didn't involve her in anything. When they determined the problem they basically told her the same thing, pick and raise. They choose a girl because they felt like they really had no choice because internally she was female. It amazes me to think that there are still medical people out there that would tell a parent such a thing. I am a bit confused though. Were they incorrect did you actually have a boy with just a large penis or did you have a "daughter" with ambigious genitalia and choose to be a boy. I'm assuming they were incorrect and he was a boy. I ask because early on in my reasearching CAH, when my son was still in the hospital (while being evaluated), I found information that indicated that if boys were born looking like girls they would not survive. I also remember getting a phone call from by OB after my son was diagnosed. He unfortunately had left the country and upon his return heard the news. He called me immediately and we spoke for two hours about everything. I remember him telling me that he thought my son had an unusually large penis for a new born and now that made sense because it was due to the CAH. Unfortunately I never new about "CAH" with regards to my cousin, I only remember my mother telling me of her and how she had to have the corrective surgery. So the family history of CAH was never in my files. Not that you ever want to have something wrong with your child but I thank God every day that it was my son and not my daughter who is 27months older than he.