Hi, and congrats on your new baby.  I know you are scared and want to know everything now.  My 2 year old son has SWCAH.  He almost died before his newborn screening came back.  His electrolytes were so out of whack.  Luckily we have a great pediatrican that discovered it in time.  Your life will get easier, I promise.  It actually becomes no big deal.  Your child will be just like any other kid!  The only thing that I think we probably do different with Carter is we are really careful when he gets sick.  We probably go to the doctor a little more than most people.  We just don’t want to take chances.  He actually broke his arm a few weeks ago, but everything went fine, and it was actually no big deal.  He gets his cast off Monday.   Good luck, and feel free to ask any questions.

 

Thanks,

Carrie