Hello,

I am a mother of a 3 year daugher with the severe form of SWCAH. When she was first born I lost thought I was strong enuough to handle everything until she was about 1 week old. I remember being upset with my own mother due to her telling me over & over that a newborn sleeps like 19 hrs a day...not my angel I’d tell her. It was very difficult getting through the infant stages and I simply couldn’t wait for the toddler stage. Simply due  to angel actually being able to tell me what was wrong.

I do recall a time that she had a very bad crisis that came on rather suddenly. My little girl was about 2 years at the time and we had gotten up early that morning to get us both ready. At the time I was a single mum and let me tell you that was no fun. Anyway, she felt a little warm that morning but I didnt think too much of it because at the time she would do that on and off. She was sitting in the high chair after drinking some milk and all I did was look at her and I knew instantly that she was in crisis. I grabbed her up took her to the hospital and told the nurse if we had to wait I’d have to give her an emergency shot (1st mistake). Anyway they grabbed my little one up and took her into a room. And this may help any future moms out there I had no idea this could happen but she had actually gone into a seizure type crisis wherein she lost the cortisol along with any sugar in her body. We almost lost her until they took the glucose readings. Moms, if this ever happens to you be sure to mention to the doctor that when the body looses its cortisol the sugar goes right along with it. They carry each other in the blood. Scariest part of going through any of this was that moment when no one realized this could happen. She ended up staying in the hospital for about 5 days altogher. We really don’t have to many people to talk to this about so if any of you would like to email me please do and I will do the same. Thanks.