Good luck and wisdom on your research.

We have a 12 1/2 year old daughter with SWCAH.  Like many of you, we were very surprised at birth.  We were lucky to have an excellent ob/gyn who recognized the symptoms immediately.  We are also lucky to live in Texas which has the newborn screening.  We survived quite nicely without a support network regarding CAH.  I just discovered this site today.  However, we did the research ourselves, have very good doctors here in Houston at the endocrine clinic and our pediatrician was also familiar with CAH. 

Our faith was already strong, but I can safely say that it has grown remendously.  We trust God with the situation and don't really dwell on it.  Our church family was very supportive in the beginning when we were first dealing with it.  I figure Jesus knows what he is doing, so we're along for the ride.

We decided to go on with life in a very normal fashion.  I went back to work as a geologist and have remained working.  For me, I am a much better mommy that way.  It also pays for the in home nanny who is our own personal angel from God.  Keeping our daughter out of day care for the first few years really helped keep her healthy.  We put her in the nursery at church after the first few months and she did fine there.  We ended up having four kids in six years, so we just kept her!

We have had three subsequent children.  We figured that if we could handle one, we had enough love to handle any more.  We did CVS testing with all three.  I took dex until we found out whether they were affected or not, then weaned off.  We are a genetics dream-one with CAH, one who carries from one side, one who carries from the other side and one completely clean.  Two girls, two boys.  (The dex seemed to fix my own personal fertility problem-hence two surprises there.)

We knew our marriage needed to stay strong, so we schedule "regular" dates (yeah right, with four kids-my husband made me change this one), do fun things, and keep on keeping on.  It helped that I took shots as a kid for allergies, so giving our daughter shots for the first few years was not that big of a deal.  We have more trouble with her asthma than with CAH.  She got my lungs, too.

To lay your minds at rest, she is such a gift.  God compensated in so many ways.  She is very bright and very interested in medicine now.  She has been taking apart just about anything and putting it back together since she was two.  She plays competitive softball and soccer year round in the Houston heat and humidity and does very well.  She knows her body and pays attention to it.  She is responsible for her own medicines now-keeps track of the cortef, florinef and singulair (for asthma).  (I double-check, but she has to grow up and deal with it...)  She is growing right on schedule and moving along the maturity path.  She loves Saltine crackers and other salty things, but she doesn't seem to need to over-salt things.

Since she is reading this over my shoulder and making snide comments, she would like to know if there are other kids out there she could talk to (especially in Houston). 

Martha