Danny,

I think it is a great idea to push forward and try to get these 20 states to conform in some way or another.  I am fortunate to be sitting in a state with newborn CAH screening.  But let me tell you it is thought to be so rare - at least where I live (in rural PA) that the Docs may question the validity of the test unless something is physically happening to the child when the test is returned and couple that with the fact that the tests take 2 long weeks to return - well, my son’s episode happened 2 days before the test came back and did us no good whatsoever.  So timely testing is important too.

Now my Son’s results are in and he was SWCAH.  I’m learning all of the genetics very quickly, something I’m sure my biology teachers from years past would be shocked about! :) But I have found out that it may be possible to have invitro done and that we’d know that only unaffected eggs could be implanted due to testing on the fertilized eggs.  Now, it would still be 50-50 whether or not the eggs would carry one recessive trait or not.  But they would not have both recessives and result in an affected baby. I’d like to get everyones opinions here.  What does your heart tell you here as parents?  My husband and I are willing to try again, but we are scared to have the exact same thing happen - we’ll get pregnant, have a child and they will die from CAH.  I don’t think I can handle that again.

So have you heard of this procedure?  Would you consider it or have considered it when you were having children? I’d just like to hear opinions. We haven’t made up our minds yet and I’m curious to hear what everyone thinks.  Thanks!