A good childhood book to read to her is The Little Engine That Could.

Dear Heather,

I had to post, I had to say something : ) I’m sorry that you are feeling doubt about all of this. Maybe a medical social worker could help you come up with a plan that would help you feel more at ease with CAH.  

I consider myself very lucky that I’ve always known. I was able to see what I looked like before surgery and my parents were very matter of fact in telling me everything. Learning about CAH was done in a gradual manner which made it just a part of life . I never sensed that they felt bad or ashamed by CAH so I didn’t feel that way either.

My adrenal glands that are located on top of the kidneys lack the ability to make cortisol and cortisol is needed to suppress the androgen hormones which without having the cortisol to keep them in line can form something that make my external genital pass for a little boys but it’s not because I only have female chromosomes, a uterus, and two ovaries. I don’t have what makes little boys into little boys which is male chromosomes and testes and the MOST IMPORTANT PART  cortisol is also needed in times of physical stress so we don’t die. As for the surgery, it was done so that she would look similar to other girls and that is what it is. Please don’t do stories about wanting her to look OK IN A BATHING SUIT because that is all just BS. Be straight forward with her and you wouldn’t be disappointed. The above is a simple and straight forward explanation. I think it’s neat that the adrenal glands have such control over the body and without cortisol it can throw off everything else in the body. Bow down to the one you serve (the adrenal glands) I love Nine Inch Nails.

I had a nurse once tell me that ambiguous genitals looked weird. I thought to myself, who are you to say what looks weird? and my second thought was lady your face looks weird (lol) but in the end I felt sorry for her because her thinking and comfort zone was stuck in a very narrow parameter. Because of CAH and the way I was born, I don’t think like that and I’m better off.

Aimee