Hi Leanna,

I have 4 boys (10y,6y,3y,1y).  The youngest two have CAH. After my third was born and diagnosed, through newborn screening, I thanked God that I had already had two other kids because there was no way I would ever consider having another one!  I also thanked God that he was my third because I said I wouldn’t have had any more kids if I would have had him first....well...I realize now that the fear of what was happening consumed me. I felt guilt, fear, overwhelmed with the diagnosis. I thought that it wasn’t possible for this to happen to me.  

 Time and knowledge and having a wonderful husband who was more than patient and understanding with me helped me get past that point.  My husband was upset too but he put it into perspective almost immediately.  It took me three months before I snapped out of it.  With that said,  I wanted to try again for one more. I didn’t feel like our family was complete. I knew the chances of having another child with CAH but it didn’t matter. I knew what to do and if that was all that God gave me to deal with I would take it happily.  My third son didn’t have any problems after he was born, never had a crisis and never was in the hospital because of his CAH.  He did go to the hospital for a burn on his arm (long story) but he didn’t go into crisis. He had stitches on his forehead (another fun story!) but never went into crisis. He has had the stomach flu and ear infections and strep throat. All the lovely bacteria his older brothers brought home from school seemed to get him.  But...he did great.  So...I went ahead and planned my 4th pregnancy.  Now I have to be honest...I took the dex because I thought about how I would feel about having a girl that had virilization. Would I be strong enough to deal with it?  I wanted a girl so bad but I didn’t want to do all the preimplantation genetics because I knew that deep down inside it wouldn’t matter to me. What would matter to me most would be how my future daughter might handle it.  So, 10 weeks along, I had a CVS done and the next day they told me I was carrying a boy.. I felt relief and joy only to find out a few weeks later that he did have CAH. It felt like a punch to my gut....I knew though that my reaction was mixed because of my hormone fluctuations from being pregnant and the dex I was taking.   By the time I went to have my 4th son, I was completely at peace with it. It was a beautiful birth, he was perfect in every way... So far he is doing great...he actually has a cold and fever today but other than that he’s doing good. I feel happy knowing that the two brothers will have someone to compare notes with and not feel lonely that they are then only ones that have this.

With all of that said, I don’t treat my boys any different than my neighbors treat their kids.  We have a big playgroup and the kids all get together and play. No one can tell that anything is wrong.  Actually, I don’t even look at them as something being wrong. They are my sons first and they happen to have CAH. That’s it. I don’t plan on limiting them in any way.  My older boys never treat the younger two differently either.

I also wanted to say that I have never heard of food allergies being related to CAH. You have to be careful because some doctors who are not familiar with CAH will try to attribute other issues to CAH when in reality they are separate issues. In your child’s case it’s food allergies and CAH.   Even though it’s not in your family history, it has to start somewhere.   I know a little girl here in my town that has such a severe food allergy that her mom had to pull her out of school because she almost died from the peanut oils in the air...that was very sad.  So, good luck on your decision. Remember, your next child, if he/she does have CAH it doesn’t mean that he/she will necessarily express it the same way.

Sandra