Our experience with our daughter was sort of similar, except we were initially told that our little girl was a hermaphrodite...which is obviously not the case, she didn't look male, just not quite like a "normal" female...after several chromosomal tests,etc, we were sent home with our precious cargo, a baby girl, two terrified parents with an infant carseat, a little pink blanket and cortef and florinef in tow..
.she also has SWCAH, so we also began adding 1/8 tsp of salt to her bottles three times a day...a whole new world had begun...
Just a short week and a half later she was admitted to the hospital due to her potassium, they were afraid this may damage her heart, after a short 24 hr stay we were released...she has had minor illnesses, nothing major, she has really been a pretty healthy baby...
She did just have surgery at Riley, so far so good, we are praying for her.
As for your encounter specifically, I will pass along a tiny bit of info that Avery's ped endo is constantly stressing..."be educated, find out as much as you can about SWCAH, it's not common, and your knowledge of this illness could save your child's life one day, you absoloutely have to be your child's advocate..."
I know it's scary, but doctors are only people just like us, we can't always depend on them to know it all, it's just not possible...
Keep in touch,
Averysmom (my first name is also Heather)
