My sister was born with spina bifida. In the United States, approximately 3000 babies are born each year with a neural tube defect. Very shortly before I got married, I was diagnosed with a mild form of spina bifida and I realized I had lived with spina bifida as a part of my life for 25 years but never really knew any real, statistical information. Understanding my risk was greater than the average woman, I began to research the causes and preventions of neural tube defects. Though I had a practical sense of the realities of how spina bifida can affect a family, I didn’t have a bigger picture of causes and long term effects and I operated under the assumption that there was a high possibility my children would be at risk for the birth defect based on antiquated research and misunderstandings that my parents were told at my sister’s birth.
When I began my own study into my family’s medical history, my research provided me with some interesting details about spina bifida that were illuminating: large cases of spina bifida were found in pockets of the coast where there are higher intakes of shellfish and an increase of folic acid intake is a preventative measure. I knew about the folic acid, but I didn’t clearly understand it’s importance to the prevention of the disease.
My family is from the coastal city of Savannah, Georgia. As adults, both me and my cousin have been diagnosed with mild forms of spina bifida that were caught as flukes. Though our environment probably played an important role (as we were all born within two years of each other), family genetics were important, too. When my sister was born in 1982, not much was known about the disease. Obviously, the advances of science and technology in the three decades after her birth have given us a much better understanding of the disease; however, neural tube defects remain one of the largest birth defects among children. These discoveries, along with my own diagnosis at the age of 25, led me and my husband to seek genetic counseling before pursuing the start of our family.