ShajiDear Laura,
First of all, I want to congratulate you and encourage you for all your efforts in making this happen.
Here is my story. My 6 year old son, when he was born, was discharged as normal from the hospital. But eventually, he was not putting on weight,and was wetting the diaper heavy more frequently than normal, and was appearing discolored. We had one or two appointments with a pediatritian, and finally was admitted at the hospital for dehydration on the 22 nd day after his birth. and there an endo was asked to see him. He immediately could say that it was CAH. Even before the blood results came he was on cortef. However, it was on the 22nd day after his birth we knew about it. This happened in Michigan, and Michigan has mandatory screeing. The hospital says the results were negative when they tested. Sometimes I even wonder if they truly did the tests!!! The endo told me that it is possible that it might not pick up in some case.
Thankfully, he is doing fine now. hope it helps you.