Hi Margaret,

Could we see your finished paper? Is there a way to post it? I'm sure it would be interesting to read.

So, you ask what kind of impact this has had on us, the parents.  I'm not sure where to start. We have only been dealing with this for about 8 months now. I have a 9 month old boy with non saltwasting CAH. He still has the classical kind but he is classified as a simple virilizer.

Well, I can honestly say that I never in my life expected that I would have to deal with something like this. It shocked me, scared me and I was in disbelief. My husband dealt with it differently. He just went along with what the doctors told him. He just said we'll give him the medicine and move on. I, on the other hand, had a hard time trusting the doctors. I spent countless days on the computer investigating. I hardly slept.  I lost about 20 pounds. I was trying to desperatly find something that would prove the doctors wrong. I did have a small victory for my little one. I proved that he was not a saltwaster as they had diagnosed him but a simple virilizer. Even though I was hoping to find something that would explain or prove that he did not have CAH at all, I was happy to find this out. It gave me a little bit more of control over a situation that I felt helpless in. By the way, I have since gained those 20 pounds back! 

My parents as well as my husbands parents all thought that the doctors were crazy, wrong, looking for a way to make money off of my son. My dad was insulted that this could be genetic because no one in our family ever had anything like this. They did try to console me by telling me that at least my son didn't have something else that was worse. This only made me very angry because at this point I didn't care about anybody else or anything else. This CAH was bad enough for me!

I never had a reason to understand genetics or anything in that relm so until I started investigating, I felt guilty that I had caused this. I have two other older children with no medical problems. I felt like I had let this one down. Even now that I know that it is genetic,  I still feel guilty that he got these genes from us!!

Luckily for me, I found this website and a few good moms. One that I call my personal gaurdian angel! She helped me so much by sending me long emails telling me how she felt and telling me that what I felt was normal. I didn't feel so alone.  I would relay these stories to my husband. I think that they made him feel better too. Although, he never  really showed to be too upset. He was thankful there was a treatment. I guess it was better this way. He helped hold me together when I felt like I was falling apart. We both believe in God and did much praying. I added my son to every prayer list I could find.

 I really do believe that God put us in Texas for a reason. We had moved from California about two years prior to having this baby. We moved because my husbands work transferred here and we thought it would be a good opportunity to have another child and I could stay home with them. In California, they do not screen for CAH. Talk about small miracles. I feel truly blessed that God put us here in Texas.  Even though God had put us in the right place, I did try to bargain with him.  I wanted him to take this CAH away.  Finally, at my husbands advice, I did go see a counselor to help me pull myself together. He told me I was grieving the perfect child and that bargaining with God was part of it. I could finally understand how and why I was feeling this way. I am a very emotional person by nature.

So, here we are 9 months later. I am feeling like a new person. My husband is as happy as ever.  Life is somewhat back to "normal". I hate using that word because really there is no such thing as a "normal" situation or "normal" anything, in my point of view. I am very involved in trying to raise money for research and building a network of parents for support and education (here in Texas).  Finding a cure would be wonderful. As one mom put it, fifty years ago, parents were wishing for a treatment so their babies wouldn't die, here we are with a treatment hoping for a cure. So, who is to say that 50 years from now, every baby that is born with CAH will be cured! What a dream come true that would be. In the meantime, I am thankful for the treatment. I am thankful for my beautiful "perfect" sons and husband.  I am even thinking about trying again for a girl.

All, in all, CAH is not as bad as I thought it was. We were  off to a rocky start. Since the diagnosis, my son has been sick twice with ear infections and fever. He came through it beautifully. Now, I feel even more comfortable.  I truly feel that this entire experience has made me a stronger person with a more defined purpose in life.  I can't speak for my husband but I know that he is proud of me and my boys and he feels blessed, as I do, to have such a wonderful family. 

I want to stay involved in helping research and education on CAH but I don't want to make CAH our entire life. I don't want my son to feel in any way that CAH will limit him. Luckily, I have made many friends who have older children that are as "normal" as any other kid. They do everything that a non CAH child would do. This is so reassuring for me and I hope it will be for my little man too. 

The impact of a "gentic disorder" has forever changed our lives. Not necessarily for the worse either.  Our life is just different from what we thought. Not worse just different.  Of course, I would have preferred not to have experienced this all. I still wish that my son didn't have CAH. I still wish... but I know that he will be fine. I know that we will be too. I know that God doesn't give you more than you can handle. He must think I can handle this so I won't let him or my little one down!

Good luck on your paper. I could go on and on but I think I'll stop here plus I have my little one scattering CD's all over the floor!

Sandra