Hi Catherine,

Congratulations on your new little boy.  My first word of advice is don’t let the CAH get in the way of enjoying your little man. Your husband is right to be so positive and look at him for the cute little bundle he is!  I have 4 boys (10, 6, 3 and 1).  My youngest two have CAH.   All with the same dad too. Just luck of the draw!  When I say luck...I mean I am lucky to have them as my boys.  I wouldn’t change it if I could.  I know it could have been much worse so I thank God that they have this and not something worse. We all know that CAH isn’t great but really...there is much worse out there!  I know exactly how you feel because when my 3rd son was diagnosed through newborn screening I didn’t believe it.  I live in Houston and here they have do the newborn screening twice about 2 weeks apart.  My son’s first test came back abnormal and so began the whirlwind of tests and doctor visits.  I was so convinced that they were wrong that I took my son to see Dr. New in NY right after Sept. 11th.  There we found out, after DNA, that he didn’t have SWCAH but he had SVCAH (simple virilizing CAH; still classical CAH).  It was important to me then because I had in some way made it better for him.  Now I realize that the "label" when it comes to Classical CAH really doesn’t matter. Some SW will act like SV and some SV will act like SW.  After I had my 4th son and we found out he had CAH too (through CVS while pregnant), he turned out to express his type of CAH a little different than his brother. Yet, they both have the same mutations.

Anyway, I was a mess. I spent days sitting at my computer with my 3rd son (1st with CAH) after he was diagnosed. I read everything I could. I talked to anyone that would talk to me. I came across this website and although it made me terrified to read about the terrible side effects etc....there was one lady who told me that when you read these posts, you have to realize that you don’t always get the whole story.  I remember reading about twins where the little girl died and her brother didn’t. They had gotten food poisoning if I remember correctly.  It turned out that the poor little girl didn’t have CAH just her brother and her brother made it just fine.  Also, what some people say was a "crisis" might not really have been. Sometimes it’s hard to know what really constitutes a crisis.   Does a bee sting constitute a crisis?...well, if you are allergic I suppose it could.  If your allergic though...that alone would be bad for someone. See what I mean. 

 There was one mom, Laura, who I believe still posts but she was WONDERFUL to me and for me. She emailed me and listened to me go on and on. I think that "therapy" along with professional help, helped me gain my strength, stop feeling sorry for my son and for me and to move and and be proactive. I was tired of feeling guilty for having caused this and I was tired of feeling sad that he had this.  Once I got over that ( about 3 months), I was on my way to being an advocate for my son.  There were also some wonderful women, who three years ago, helped me keep my sanity. I did feel bad that I spent the first three months of my son’s life feeling so yucky that I didn’t enjoy him being so little for such a short time. I really made up for it with my 4th. I enjoyed every minute I held him and changed him and played with him and nursed him. I made sure to appreciate every moment. Even the bad ones, blood draws, etc.  It was just part of him and I knew that. He was still my prefect little man as were all my boys.

I don’t mean to ramble but I know how  you feel. It will get better and you will see that CAH is very manageable.  It sucks that they have to take medicine but then again it sucks that asthma kids have to take steroids and people with high blood pressure have to take meds and kids with diabetes have to take meds....see it’s just part of life and it becomes so routine. Believe me...I have two and they are both doing great.  They have done great and I don’t treat them any differently than I did my first two that don’t have CAH. 

Ok...I have to go finish making dinner. Please feel free to email me at billings6@sbcglobal.net. Where from CA are you from? I grew up there and moved to TX when my husband was transferred about 5 years ago. I grew up in So. Cal and went to school in San Luis Obispo.   We spend our summers out there. If you want, you can call me or I can call you.  I don’t pay for long distance.  Thank goodness because my mom and mom in law live in CA and I spend lots of time on the phone with them!!

Don’t worry, time will ease some of the pain you feel now and soon you will see that you have a happy, healthy little guy!

Take Care,

Sandra