LauraI am still working on getting Newborn Screening done for CAH here in Ohio. Can any one explain how they found out through Newborn Screening like:
-How many days did it take for the test to come back?
-What day was the test done? (the day of birth, next day, 24 or 48 hours later)
- Was another test done to confirm the first test done that showed positive for CAH?
-Has anyone received a false/positive test that you know of ?
-Who phoned yoyu with the results?
-Was your local Health Department involved in any way with your follow-up test results?
I am asking all this because of the "obstacles" I am running into here in Ohio. They are giving me reasons they are having "problems" getting the screening for CAH on the list and I want to give them solutions of my own. (I can't fight without amunition) Amunition, besides the obvious of life and death, would be appreciated. They already were emailed stories of how NOT having screening for CAH in Ohio effected our families. (Thanks to all of you who emailed!) I hate to ask this HORRIBLE QUESTION, but does anyone know where I can find statistics on infant deaths that were related to CAH because they were never diagnosed with CAH at birth? Thanks for your support ahead of time.