Hello there,
I have not been to this site for a year or so but just wanted to share our story a little too, so hope you get this. Yes, having another child with all the extra unknowns is / can be more stressful and scary when involving CAH and or when other bio genetic issues are more possible. When we had our daughter with CAH it changed everything in our lives and some future plans we had been making. But she is an awesome blessing to our lives and is so smart and beautiful. We too had to talk about having more children, what options for prenatal care. After talking and praying a lot about it we decided to go for it – we had talked about having three children before our daughter was born. We also decided not to have any of the Dex or the CVS or amnio done. Again this is something you will both have to talk about and decide on your own – there are many different reasons to do those things and not to do them (I'm sure there are lots of good people on this site that can share both sides with you – we can as well but like I said I had not really been here for a time but will for a few weeks now – you may also want to consider how Dex may effect you and your ability to care for your daughter and family with the possible side effects of Dex – weight – mood – emotions – everyone's body is different thought). But we chose not to. We just had a boy this year and he was born without CAH and is not even a carrier. This was such a miracle for us and there is so much more to this story…. The pregnancy was somewhat different than the first but many of the ladies we talked with said their second pregnancy was different and it is normal – your body remembers the first pregnancy and many other things etc etc. I think some of the other posts talked about when some of the best times to get those tests and start Dex etc if you go that route.
We met with different specialist before the birth, other people along the way. I would say again (or the first time if I didn't yet) that you will always need to be your child's advocate – most of the time you may know more than those trying to help you – due to your own personal experience, study and hearing others experiences on this and other sites.
When our doctor asked my wife "are you going to take the risk of having a child one out of four with CAH…. my wife said no I'm taking the chance to have a three out of four healthy child."
As far as the testing after birth – it does take 5 to 7 days – and that is the fastest that we know of to find out if the child has CAH – but until then they need to be testing the Electrolytes – we did this right after birth and then every other day until we got the results back. If the Electrolytes are "off" then you can start working on getting those balanced out even before you get the results of the other test back.
I would say that you / us as parents need to know more and more about CAH as we can… I still need to learn much more for our daughter and each new stage she / we go through each day / year… The doctors / staff have messed up / not done as good of job as they could of on a lot of thing along the way for our daughter - tests – meds – etc… Even today there is only one lab tec at our hospital who knows how to withdraw, store and send her blood to be tested every few months. If someone else was there it would always get messed up, not stored correctly, not enough blood or something else etc… So after two years of that we always call to see if she is working before we go in. Even when we would clearly explain to others what was needed they never got it right – which equals driving there again and more pokes for our daughter and more frustration…
Please only take all of this as our own experience and not what you should or should not do. Just keep asking questions, reading and praying and I hope you find the answer that is right for you and your family.
Be blessed and I hope the best for your daughter and family along this journey of life.
