Hi everyone! I hope the new year and flu season (yuck) have been good to you and your families so far.

I have a question, which has been dividing my husband and I for the past several months. Our nine year old daughter has SWCAH, and had genital surgery when she was 9 months old. 

She is completely aware of her condition and is beginning to take more responsibility for taking her med., and also communicating when she doesn’t feel "right." She wears a medical alert bracelet and is fully aware of the life threatening nature of CAH. 

Now my question: She has no idea about the circumstances surrounding her birth (we thought she was a boy for nine days) or why she had genital surgery. She knows she had surgery because we have pictures. I have always explained that she had the surgery to help her overcome the chronic UTI’s she was having. (This is true, but that wasn’t the only reason.) Now, she is having trouble with UTI’s again, and we need to see her urologist.    

I’m just not sure how young is too young to have "the talk" with her about this other aspect of her condition. I really would like for her to hear it from us, and not overhear something at a Dr. appointment, or have a friend’s parent research the condition and feel the need to report it to their child. 

Her endo assures us she is not near puberty, and I always thought of that as the "deadline." However, I have recently thought maybe I should tell her now. She is very mature, deals with the day to day CAH well, and I would rather it be like something that has always been there, rather than another "issue" we spring on her at puberty. My husband would like to put it off as long as possible. He feels she is too young, and just deserves time to be a kid. I also see his point.

I would love to hear your opinions. If you have CAH what did your parents do? If you have an older child with CAH how did you handle it? Even if you never have or ever will need to have this talk, do you have input on a good time, age, or way to go about it? Thanks in advance for your guidance! God bless this site and all of you!

Katrina