Hello Kat, my name is Liz and I'm 21 years old with SWCAH. I can totally understand where you are coming from on the whole worrying about your child being affected with this disease because I have experienced it too. Last year in March I found out that I was pregnant and going to have a child in November. During my whole pregnancy I worried that she would have this disease and it freaked me out because I did not want her to have to face everything that I have had to. Everyone kept saying that at least she would have support from me if she did have it. We never did have my husband tested to see if he had the gene or anything so we never did find out. She is 3 months old and we are still trying to find out whether or not she has it. All of the levels that they have tested have been high so they believe she has it, but I'm waiting for the genetic test results that tell me whether or not she has it for sure.
I can say that yes I did worry about it, but everyone is right. She at least has me to talk to if she ever feels alone. At least she is not going to be as alone as I was when I was growing up because she has me as her mother and I can explain to her my feelings of this disease. I just hope that she'll grow up and understand that this is something that will not prevent her from doing most of the things she wants to do. That being said, I hope she grows up to live a very fullfilled life.
I hope that you figure out everything because I can totally understand where you are coming from, but remember that if you did ever have a child, you'll be able to help her understand that she is not alone.
Rosalie,
I do not believe that my husband has the CAH gene, but we have yet to have him tested. Can you please explain to me how it works when you yourself have SWCAH and you had a child that was born with it, but the father doesn't have the gene? ;-) I'd appreciate any help you can give, you gave a very good explanation. I had always heard from my doctor that if the father does not have the gene, there is a 50/50 chance that she will get it. 50% meaning his side and 50% my side. Then I heard that if he did have the gene, the chance increases. Thank you for posting your opinion, it was very interesting to read.
Liz
