I was rereading some of the old messages, and I was triggered by Martha's story about the attitudes of her doctors when her new baby was born. I thought I would share this with all of you. I have 2 children at home with CAH. They are severe salt wasters, and like many of you, I almost lost my first born who is a boy, because there was no history of anything in our families. Thank goodness for Texas and their newborn screening program, but even that was almost not enough to save my son. Anyway, when I became pregnant with my third child, I debated whether or not I wanted to go on the Dex treatment again. I searched out what was supposed to be an excellent group of women OB's that handled high risk pregnancies. I explained my story and all medical background to not 1 but all 7 doctors in the practice, since I had to meet with all of them at least once. Every time I went in for a visit, I had to and made it a point to rehash the importance of an amnio, and the need to have testing done as soon as the baby was born, since Maryland, where I live, does not screen for the disorder. I chose not to take the Dex, a gamble that turned out in my favor because I was carrying a boy. I told the doctors to contact Cornell and Dr. New, who performed the amnio analysis on my second child, and I provided all my previous OB records and any info I could on CAH and prenatal testing. I received news 2 weeks after my amnio that my baby wasn't affected with CAH. I was still insistent for some reason, that a bloodwork-up be done as soon as my son was born, just to verify the findings of Cornell. I didn't want to chance having another son go into adrenal failure because someone made a mistake. While in labor, I mentioned again to the delivering OB what tests needed to be done when my son was born. "No problem, I already have the ordres drawn up for the neonatologist." The birth of my son went well, and I was sent home and told to wait a few days for the test results which were coming from some DNA lab in CA. On the third day, I called my OB and my pediatrician, and neither one had any test results yet. On the fifth day, I was getting nervous, still no test results. I called the hospital where I had my son and checked with any and all staff involved with the birth of my baby--it turned out no bloodwork was done. I called Ann Carlson who works with Dr. New at Cornell, and asked her to verify the amnio results with me over the phone. After all my specific instruction on what to do, my OB only ordered part of the test that checks for CAH because she didn't think my insurance company would cover the whole test. So the results of the amnio were not conclusive-they suggested that my son did not have the disorder, but the test that was done could not absolutely confirm it. At 6 days old, I had to drag my newborn son back to the hospital for a major blood work-up to absolutely rule out CAH and then wait for 3 or 4 more days for the results. Needless to say, that was anordeal. They couldn't find any good veins and they needed alot of blood, so most of it they got from squeezing his heels. And as many of you know, heel stick blood is not always the best because it can hemolyze and cause incorrect readings or results. So now I have to find anothe OB-GYN since the 7 in that practice couldn't handlemy case-I don't trust them. My son does not have CAH, so I am very happy things turned out ok. Just remember that you have to fight for the safety and well being of your children, because no one else cares about them as much as you will.