A few weeks later we visited a neonatal diagnostician, otherwise known as a genetic counselor. We learned a lot of information in this meeting, including our risks, how to prevent birth defects and a little bit more about why Jeremy has to go to the bathroom all the time (who knew it was due to his spina bifida?!?)!
We are at in increased risk of having a child with spina bifida. Not only does Jeremy and his daughter have spina bifida, but he has an extended family history with this birth defect as well. Our risk is anywhere from 4-50%. This is such a wide range for two reasons: 1) Jeremy's mom's side of the family is the carrier and he has lost touch with many of those family members (including extended aunts, uncles and cousins) and 2) sometimes people will have spinal deformities and not even know it. Spina bifida can range anywhere from deformed vertebrae with no symptoms, to an exposed spinal column with physical and mental deformities.
There is good news, and the counselor stated that, of all birth defects, this is the best one to have! With research and the latest medical technologies, it is well known that neural tube defects can be prevented by increasing folic acid. Typical prenatal vitamins contain 400mg ... it is recommended that I take 10 times this amount. It is also important to take this vitamin in the early stages of pregnancy as the spine is fully formed in the first 28 days of pregnancy - which means it is often completely formed before a woman even knows she is pregnant.
Luckily, the increased vitamins have no side effects on my body and I have been successfully taking the folic acid since February (just in case!). We have shared this information with a few people and I think this has taught us one of our first pregnancy lessons. It seems as though everyone has an opinion and has no problem sharing that opinion with us. People are quick to judge us in our genetic decisions and although they always mean well, it is not easy information to hear. We believe in today's technology and knowing as much information as we can. If we can prevent a lifelong battle with medical, physical and mental struggles we definitely will. It would never be an easy decision to make, but we are going into this with an open mind and are willing to accept all options and possibilities. We know some decisions might be very difficult to make and have life long implications. We want our child to have the best quality of life possible and are willing to make some difficult decisions along the way.
