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First off, thank you all so much for your speedy replies! I've been feeling overwhelmed with all the information that I've learned in the last several weeks, and have waffled back and forth between "this is just awful" and "this is really quite manageable." It is extremely helpful to have people who are familiar with the ins and outs of this disorder to offer practical advice.
I learned about this completely by chance. At 19 weeks, I had a routine ultrasound and everything looked great, but the ultrasound tech could not get one measurement because the baby was moving around so much the whole time. She also told us that she was 60% sure the baby was a girl. I had to go back four weeks later to get that last measurement, and I asked the tech to confirm that it was, indeed, a girl. She checked and said that now she actually thought it might be a boy, but she couldn't be sure. The woman is actually an acquaintance of mine, so she asked me to come back at my next visit to check the gender one more time. We actually went two more times, and both times she *thought* it was a boy, but really wasn't sure. After the last ultrasound, she took the films to my midwife, and they decided that there might be something else going on. They referred me to Hershey Medical Center, where another ultrasound was done on Jan. 2nd, my husband and I both had blood taken, and the docs did an Amneo. A genetic counselor there gave us info on CAH as a "worst case scenario," but they also gave us a number of other possible scenarios of what could be going on with the gender of the baby. A few days later we learned that she is genetically a girl, and in a conversation with that genetic counselor, I was told that the likelihood of CAH was now much higher. We had the genetic test for her confirmed last Friday. The genetic counselor told me that the deletions in the (21st chromosome?) show that it is likely severe salt-wasting.
We're in the process of assimilating all this information, and trying to adjust to what our new reality will be. All your well wishes are much appreciated!
