BetsyHello,
Wow was I glad to find this site! Yesterday my Husband and I held a memorial service for our son Andrew who passed away on Monday. He was born at 28 weeks, was 1lb 15oz and he had been diagnosed with CAH after (2 weeks) he was born (thru the state screening in PA and a great neo-doc who had a gut feeling). He was in the NICU and had a big potassium problem (too high)then his kidneys began to fail and he suffered serious brain injuries from the potassium and kidney insults. Way too much was stacked against this little guy but he put up one heck of a fight.
My questions are about the CAH. We had his blood sent to Dr. Maria New to find out what kind of CAH he had...I'm thinking SW because florinef was the med he was being given as well as cortisol. (?) But now many other questions come into play. Here we've lost this beautiful baby, I'm 31 and we want children desperately - what next?
My Husband and I had basic genetics testing done with this last pregancy - just to make sure we were basically OK - but CAH never came up in that testing. Is this common...are there more tests we should have? Do we dare try again? is there really a 1 in 4 chance of CAH again? Ahhh, so many questions and I'm one who needs answers now.
I hope you all can help...I'll be away for a week.(my Hubby and I are going away for a week to hide and heal) but I'll look back here for advice next week.
Thanks in advance!
Betsy