Dear Jamie,

Congratulations on a beautiful wonderful new baby girl.  Was her condition found at birth due to ambiguous genitalia?  That’s how I found out my daughter had cah, then a few days later we had to bring her back to icu due to vomiting, & found she was salt wasting.  Once she was stabilized she didn’t have an adrenal crisis until she was 12yrs old and caught a flu virus.  She passed away 2 days after her 12th birthday.  All I can tell you is to be as prepared as possible...it is very scary to have the salt wasting form, which can be dangerous.  When she reaches puberty take extra precautions to look for signs...I let my guard down & thought it was just another cold...in addition ems was not prepared/educated to help my daughter in a shock crisis. She was an honor student, always joyful, outgoing, emotionally well-balanced and never cried once I was allowed in the room with her to get her blood drawn.  She was better at taking blood tests than most adults.  I know your fear, but your daughter is a blessing, since we don’t know their longevity in life...do something new each day with her & fill her life with love.

Many blessings, a