Am I making way more of a big deal out of things than the situation actually warrants, or is there truly an incredible lack of information available for women with spina bifida seeking advice on pregnancy, labor and child care? Granted, my own pregnancy went smoothly and was handled very professionally by my doctors. But still - before I became pregnant it would have been nice to have at least been able to read some first-hand accounts of spina bifida pregnancies, or to read up on the latest research and scientific findings on the subject.
As I've written here before, I found no information of this sort available to me when my husband and I were considering pregnancy. Even my doctors - professionals who either specialized in spina bifida, bone structure and/or high risk pregnancies - were not able to give me and my husband any concrete answers to our questions regarding what a pregnancy would entail for me in my situation. I'm sure the fact that spina bifida is so multi-faceted - so different for each individual who has it - does not help to form any sweeping generalizations for any medical issue, least of all pregnancy and childbirth. But answers such as "sure you can have a baby - we'll just have to see as you progress what will happen" are not altogether comforting messages to process.
What did I find out back when I first became pregnant? Well, for starters, I was told by both my neurologist and OB/GYN (whom had discussed my case with each other) that I should remain on my Carbatrol anti-seizure medication throughout my entire pregnancy. The ill-affects to the fetus of having a seizure while pregnant, they told me, far outweighed the increased risk of disability to the baby as a result of the medication. Fine - both my doctors agreed and I knew that I would be closely followed throughout the pregnancy to see that my medication levels did not rise too high. And at 16 weeks gestation I would have a Level II ultrasound to check on the health of my baby. I trusted the decision and stayed on the Carbatrol.
But you know what's now disturbing? I now see a new neurologist whom I love and he has agreed to monitor me as I go off of my medication altogether. He said, though, that if I had decided to remain on the Carbatrol and if I then decided to have another baby, he would highly recommend that I switch to a different anti-seizure medication for the duration of the pregnancy. If I recall correctly, he said Carbatrol carried the greatest risk of spina bifida occurrence in fetuses. Hmmmm. VERY interesting. I knew I never really liked my previous doctor and that both my husband and I found him to be old fashioned and highly conservative in his medical thinking. Let's just say that this new information from my current neurologist doesn't do anything at all to improve my opinion of my previous doctor.
Anyway, I also was told that I should remain on my 4000 mcgs of folic acid that I had already been taking for the previous couple of years. The average woman with no history of birth defect in her family should take 400 mcgs/day of folic acid in order to decrease the risk of neural tube defects for her baby. But a woman with a family history of birth defect - or who has the defect herself - is to take the prescription dosage of 4000 mcgs/day to ward against spina bifida and other neural tube defects. I never had any disagreement with this decision and was happy to do what I could to increase the chances of having a healthy baby.
My OB/GYN also kept close tabs on me in terms of UTI's. Women with spina bifida are more apt to suffer from UTI's during pregnancy than healthy women. So, every time I went in for my OB/GYN appointments, I was tested to see if I had developed a UTI. Fortunately, I never did and I remained in general good health throughout the entire pregnancy.
Well, you can read more details of my pregnancy and delivery in previous blog postings here, but suffice it to say, it really all went very well. But that's just me. I've since heard from other women with spina bifida who have had very different experiences in pregnancy and childbirth from my own - both better and much worse.
It's high time there were some published studies done on the effects of pregnancy in women with spina bifida - even if it doesn't prove anything earth-shatteringly surprising. But maybe it would. Both outcomes would be interesting to discovery, I think. Just having some legitimate information out there for interested women to read, perhaps enabling them to feel more comfortable with what may lie ahead for them in their journey towards pregnancy and childbirth would be a wonderful thing.