My CAH Pregnancy Story (Part 1)

I have been asked by several people if I would share my experience about carrying a daughter with CAH full term, all while being on Dex (short for dexamethasone). I am more than willing to talk, e-mail, converse, answer questions to ANYONE who has to make similar decisions about the cards that they have been dealt to deal with. (Also, I need to write as a disclaimer that what you are about to read is based on decisions I have made personally and are not in any way associated with the CARES Foundation or any other organization.) I will be breaking this story up as it would probally be WAY to long for anyone to read all at one time. But if you want to contact me talk directly, please do so!

My story can begin on New Year's day when we found out we were pregnant. I KNEW that I was pregnant but my beta test came back negative, and then a week later, it was confirmed via another beta! So being that this is my third pregnancy, 2 pregnancy for me to worry about the results of a CVS, my husband and I discussed me going on dex.

I should back up the story to my 2nd pregnancy. Jake, my 1st, was born and diagnosed with CAH on day 4 of life. He is amazing and we take extremely good care of him. He has an amazing pedi-endo, and we are on top of levels every 3 months. He has olny been in the hospital 1 time with the rotovirus at 6 months, and we have had no major crisis since that day. We are VERY fortunate to have a healthy boy who is a SWCAH child.

We were not expecting to have any other children, but low and behold, Mia was conceived...and we were terrified of what we had done. Jake and Mia are just 14 months apart. So the newness of having another child was part of it, but also know what we might be up against with us being silent carriers of the CAH gene. I immediately went on the dex, but honestly, I did so because I was told to do so...I really hadn't done much research or knew my way around the CAH community as I do now. The dex was a very hard drug for my body to get used to. You adjust as one does for any type of medication. The biggest adjustments were the insomnia and the increased appetite. I would just tell my husband that could never get that FULL feeling. Very strange.

We did do a CVS test through Florida Perinatal and the first set of results told us it was a girl. Honestly, I was so sad. I had always wanted a little girl, but now I was even more worried about what the 2nd results would be. So thousands of rosery's later, we did get that call, that said she was healthy and not a carrier. I can easily remember the time and place we got the call. I stopped taking the dex immediately, but MY body crashed. I didn't realize that I was probally going through withdrawl symptons, but I slept for what seemed like a month and didn't eat very much at all.