I have an almost 18 month old daughter with SWCAH and will be having my second child in late December. My husband and I decided not to do any prenatal treatment with this pregnancy. I know that this is a very personal and sometimes controversial decision, but I will share my reasons for not doing any prenatal treatment with you. First of all, if the baby is meant to have CAH, it will have CAH. There is nothing we could do to change that. Secondly, I had a miscarriage at 9 weeks before getting pregnant with our daughter, and I was not willing to take the risk of having another to do the CVS or amnio. It is my understanding that if you've had a previous miscarriage, you are at a greater risk for having a miscarriage if undertaking these procedures (although the risk is minor, especially if you have it done by a very experienced doctor.) Also, being pregnant and taking care of a very young child can be a challenge in and of itself without adding the possible side effects of taking Dex on top of that. We also didn't feel comfortable with the possibility of exposing our baby to Dex if we had a boy or an unaffected girl. Finally, our daughter was between a Prader 2 or 3 with "textbook perfect" internal female structure and organs according to her urologist. Under the assumption that any future affected daughters would probably look like our daughter helped make us feel comfortable with our decision not to do any prenatal treatment.
This isn't to say we haven't done anything to prepare for our next baby. During our "big" ultrasound, we asked that the sonographer take a look at the genitals to make sure things looked as they should. We know that this isn't very accurate, but it could help. Unfortunately, we have a very modest baby whom kept his or her legs crossed the entire time. We are also working with my OB and our daughter's ped endo to get the baby's cord blood drawn and sent to the lab to test the 170hp levels. The ped endo is not going to let us leave until the results are in. My husband and I also know that to look for at the birth and what to expect this time around as nothing could have been more dramatic than the birth of our daughter and the eventual stay in the NICU, additional education, learning to give the emergency injection, ect.
I hope I've given you so insight into our decision making process. I know that there will be others who have decided to have prenatal treatment who will be able to share their insight as well.
