Starting out

Since we found out that baby boy #3 has an open neural tube defect, we have been dealing with many emotions. Finding an outlet for these emotions has been challenging, so I started writing
many of my feelings down. This helped some, but the wonderful group of moms of kids with Spina Bifida that I joined encouraged me to blog about it. This will help communicate my thoughts on everything with those who would like to know as well as keep those close to us in the loop with updates. So let's see how this goes....

We found out on March 12th that our little guy has spina bifida. This was easily the worst day of my life, I think I will forever remember the details of that day pretty vividly and I now feel that my life can be broken into two parts, before Diagnosis Day and after. It has been a bit of a whirlwind since then, our moments have ranged from feeling hopeless despair like it is all a bad dream to hopeful and inspirational from those around us and those that I have met. The major cause of pain, for me, has been that this is my fault. I have had countless pep talks from doctors and other moms that this isn't my fault and these things happen, but there is nothing that anyone can say that will change my mind from the fact that this is my fault. We weren't trying to get pregnant, I was not taking the pre-natal vitamins which have the necessary folic acid in them that can help reduce the likelihood of Spina Bifida.  I was very sick at the beginning and couldn't eat for days at a time, I had to go on medicine to be able to even drink water...could this have caused it? I know spina bifida is determined very early in the pregnancy (first 3 or 4 weeks), I didn't even know I was pregnant then, could I have done something during that time to cause this? Even though I have come across those that took the vitamins, planned for pregnancy, did it all 'by the book' and still had babies with spina bifida, I will always have this hanging over me that I did something. It is my job to grow a healthy baby and I was unable to do this for my son this time.

After finding out at our 20 week ultrasound about the baby's diagnosis, we have been run through many more test (MRI's, Fetal Echo, Ultrasound, etc.) and we now know that the lesion (the opening in the spinal cord) starts around L3/L4 (the 3rd or 4th lumbar vertebrate) and goes all the way down the spine. The frustrating part about the pregnancy phase of this diagnosis, is there are no answers for what any of this means for baby boy. The damage to the nerves from the amniotic fluid is completely random and affects each individual differently. So he could be paralyzed, or he may walk. He could have no feeling from hips down or maybe no feeling in just his feet. His brain could be affected by the shifting down the spinal cord (Chiari II) and need a shunt or it could have no symptoms. He could have no bowel/bladder control. I have heard the phrase 'wait and see' more times than I can count. I have endless questions that no one can seem to answer and it is hard to deal with that. What will our little guy go through? How can we best be prepared to help him and give him the best chance at achieving all he wants to achieve?

As I have explored the spina bifida community, I have been amazed by the strength and tenacity of so many of the parents and caregivers of these young little fighters. It seems it takes a special kind of parent to have a child with special needs. You must learn to fight for your kiddo and be their advocate. You have to be proactive, but knowledgeable. Patient, but persistent. I find myself doubting that I have these qualities in me. My little guy deserves someone to fight for what is best for him and to learn everything they can about what he is going through and might face in the future. How do I find this strength? How do I channel an inner warrior mom that can help my little guy? These are some of the thoughts that keep me up at night. However, in the same stream of consciousness, I remind myself that this is spina bifida, it is not cancer, it is not terminal (the vast majority of the time). He will be expected to have a long life given proper medical care. He will get to have a life and be loved by an amazing family. Although he will have different struggles than our other two dudes, he will still be a little boy. He is a child that happens to have spina bifida, he is not spina bifida. I don't like the word disability for many reasons....he will have his own Flach-ability!!