My experience.

My daughter was born with ambiguous genitalia.  We live in Texas and CAH is a part of the newborn screening.  When the doctor told us there was a problem, there was already a test being made for CAH.  My doctor told us of the possibliity of CAH and that they would know very soon because of the test being done.  He called a ped. endo. at Cooks-Ft.Worth CHildrens Medical center and set us up for transfer after the 3rd day.  My daughter was admitted to Cooks where they did the sonograms to check for the female internal organs - and yes the were all there.  We stayed at the childrens hospital for 2 weeks while they monotored her meds and trained me to care for her.  This wonderful hospital has private rooms that allow parents to stay there, a couch that made into a bed - a telehpone and desk, a rocking chair/recliner, and a tv (like a hotel room).  My daughter was not hooked up to machines, she was under the biliruben lights because of jaundice, but that was only for a few days.  She was in  normal private room.  The nurses monotored her "dipers output", I cared for her totally, they did want to examine all diapers (what a fun job). This was to check for dehydration. I was fed every meal - because one meal comes with the room and since I was nursing her I got to eat the hospital meal that came with the room (it was funny because it was all kids food!).  I was trained by nurses how to give injections and had to actually give my days old daughter an injection before they would let us go home.  I was educated on CAH and my ped. endo. send another CAH parent to visit me and she came back days later with her child to show me he was as normal as can be. 

The only negative I can remember (besides being scared to death about an unknown condition with my newborn daugher) was when one doctor told me if this condition was not CAH and my child turned out being male in genetic gender, I would have to raise him as a female because of the inadequate size of the penis.... that did upset me.

My overall experience is this:  I am so comfortable with the CAH that it is a part of our life.  It does not change our life one bit.  I do have to be prepared, I do have to pack medications when we go on trips.  I do have medication stashed at every relatives home for that unpredictable "let her spend the night with us" times.  I did have to educate my family to CAH (easy because they wanted to know).  I do watch her when she does not feel well - but so do my friends with "normal" children.  My daughter plays sports, she goes on class field trips, she spends the night with friends, she rides her bike and roller blades, she is smart in some areas of school needs a little extra help in other areas... she is so normal.