Congratulations on the birth of your daughter!! When I first heard about CAH over 15 yrs ago now, I was scared and confused too. Once you get used to the day-to-day medication schedule, and are familiar with what to do when your child gets sick, you’ll feel much more able to handle this all.

As far as surgery goes: unless there is some abnormality in the urinary tract that causes problems ... why would she need surgery?? A "mild abnormality of the external genitalia" is not life-threatening, and may not need to be addressed... ever! (this is a hot topic around here, as you will find out!)

What to tell friends?? I am more concerned with the emergency care of my daughter, and how to explain this to friends (like why I’m not comfortable letting her go away with her friends’ family for a week of holidays, etc.). I usually just tell people that she has an adrenal condition that needs some extra vigilence when she’s not feeling well. You don’t owe anyone a detailed description of her condition if you don’t want to (and her genitals are HER business!).

The best advice I have to offer is: become familiar with general care during times of sickness, and for emergency care (there are oodles of posts about that here - your doctor should have given you detailed direction too), and especially make sure that you have injectible Solu-Cortef on hand and know when/how to use it; also, get your daughter a Medic Alert bracelet. But most of all .... enjoy your precious little gift!! There are healthy, grown, well-adjusted CAH women here (some with families of their own!)... and this gives me incredible hope and strength in raising my own little CAH’er!

Blessings.