Spina bifida runs in my family. In both sides, actually. Knowing I'm going to be in my early thirties before I have a child, it's just one more thing I'm scared to pass onto the baby.
My grandmother had a child with spinal bifida that didn't survive. The worst part about it was the way the medical community would treat women at the time. As soon as they knew something was wrong during delivery they put my grandmother out and my grandfather had to make any decisions. She never got to hold the baby or see it. They treated her as if she was unable to make decisions about her own delivery. This affected her greatly all her life. She never talked about it, the baby was never brought up in the house. And for the rest of her life on the baby's birthday she privately mourned, becoming deeply depressed and pushing everyone away.
My grandmother was a strong willed person and the doctor took away her ability to deal with the loss the way she should have been able to. As an adult. An equal. A mother.