Hi All,
My name is Doug. My wife and I have been married for 10
years. In 2002 our 1st son Andrew was born at 28 weeks. The NICU
doctors tested and discovered he had CAH. They sent away a 2nd test
because they didn't believe the first positive one and were not sure
how to treat it (so much for a level 3 NICU). All the while he was
in crisis for almost a week. When they truly realized the situation
they flew him by helicopter to Hershey Pa Medical Center where they
rediagnosed and attempted to treat him. Too little too late. He
passed away when he was 1 1/2 months old. Nothing will ever be able
to rid that grief. The only good that came from this was that it
made our marriage stronger.
Who knew that both my wife and I were recessive for CAH. We
had never heard of it. We even went through genetic screening earlier
in the pregnancy. Luckily my wife and I had two beautiful children
(boy and a new girl) who both are also recessive for CAH and born
after Andrew passed. Early testing by Maria @ Cedars Sinai eased our
fears.
I truly respect all who live with CAH, and am happy that there
are resources such as this group and the CARES Foundation to educate
and link us.