Hi Maya,

Congratulations on your precious baby, and you are soooo lucky that she had the mild abnormality to tip the (might I say astute) pediatrician off. Chelsea also has non salt wasting CAH (or NCAH) and we did not catch it until she was 6 going on 7 and by then she had growth issues and had gone into precocious puberty.

The things Wendy-Lee told you are the absolute truth, and mostly I agree with her about what you need to tell people. If asked, we simply say she has an adrenal insufficiency. We invite them to look up sites such as the CARES foundation or the Magic foundation if they would like more info. Her genitals and their shape, form or lack there of are not up for discussion by anyone anymore than yours are! Chances are from what I’ve read (Chelsea has normal genitalia) that if her "abnormality" (who is to say what the heck normal is anyway???) does not interfere with her proper bodily functions, surgery is completely cosmetic and optional.

Chelsea is 8 almost 9 now, so as you can see I’m fairly new to this too and completely understand your fears. Learn as much as you can when you are ready to take it in, but most of all try to relax and know that you are way ahead of the game with NCAH. The baby doesn’t salt waste and that is WONDERFUL. NCAH is a much less life threatening form of this condition. Don’t get me wrong, you still need to take her med schedule seriously and watch her close when she gets sick. Check out your pediatric endo thoroughly and make sure he/she answers ALL your questions. Chelsea leads a fairly normal life, other than her extra doctor appointments and the early puberty issue, which has been put on hold by medication that hopefully your baby will never need because her hormones will be in control by the Cortef.

I am in extreme upstate Connecticut, right on the Mass border. Where are you in Mass? I would be glad to chat with you or email you anytime. You can email me by clicking on my name at the bottom of this post.

Bless you and your new baby, and God has smiled on you in many ways......a beautiful baby, an early diagnosis, and you found this board right away and there is lots of love and help here. Welcome.