Wow, Nicole. What a mess. Because Kyle was our second child (and we had one of each and sort of always hoped things would turn out that way), we decided not to have more children and we took care of that surgically. So, I cannot imagine what that was like, but I do know that every time I go to an ER or have to speak with anothe doctor on call for our ped...it is that same thing. I am telling the doctors what need to me done. I always felt that I explained the disorder...being doctors and knowing how the body works better than myself..they could determine what risks might be going on. Do we need to stress for 24 hrs? More? Do we need to bloodwork to make sure things are okay? Can this trigger crisis? etc..... I found this is not the case. It is really disheartening. I like to think God gave our children to us because we are good at standing up for our kids and demanding what they need (you know how some parents need direction at every turn...hate to think how a child like ours would fair then!) At any rate, I am glad that things turned out well in the long run. BTW.....I checked out a website that someone posted about a family in GA who lost their son via loopholes in the screening process. If you haven't seen the site, it might be worth checking into. There is a link where you can write your congressman/woman, and to who heads the certain agencies. I also found that this family did not have much to read about CAH. She gave a few links though(which just goes to show how hard it is for US to find info when we need it!) It certainly lit a fire with me that something should be done about the screening process. And if you take the time to read some of the symptoms these other disorders have early on....it sure makes you wonder. Many start like our kids. Poor feeders, vomitting, jaundice,...all withing the first few weeks. With warning signs like that with so many newborn diseases, it makes me so mad that our ped ignored all of that. It could have been anything!!!! Or perhaps they DEPEND on the screening to find it and not their own medical expertise. Hmmmmm tylerforlife.com