I read that the CAH usually does not die until 9 or 10 days from CAH. Maybe that is just an average, because my first son, Stephen, was 5 weeks old before I finally got him diagnosied with CAH and it was almost too late. Thank God it wasn't. The doctors told me if he had died they probably would have not been able to tell it was the CAH that killed him because the blood levels are off after death. Again, I am thankful to God, that I have my son. The genetic doctors that I have seen and tested my husband, son and I, are at Genetic & IVF Institute, 3020 Javier Rd, Fairfax, Virginia 22031. email: givf@givf.com or 703 698-7355 or 1-800-522-GENE. We saw Dr. David Beck and both my husband and I are carriers but not affected with an adrenal problem. It is 25% chance or 1 in 4 chance to have a child with CAH if both parents are carriers. Dr. Maria New, Cornell University, ran the genetic testing after Dr. Beck took the blood samples and CVS (prenatal - chorionic Villus sampling) of our unborn child - Adam. Adam also has CAH. Please email me - preston@kreative.net .... if you have other questions or call me 703 370-4611. I have know CAH for almost 6 years now.