What is Spina Bifida?

Spina bifida is a complex birth defect of the spinal cord, or “neural tube defect”. Although I know more than I ever wanted to know about this condition, I’m going to provide links that will explain SB better than I can.

About 80-90% of people born with SB develop hydrocephalus. . Luckily, Lilly didn’t need a shunt for this condition, although she gets regular MRI’s to keep an eye on the state of her brain.

About 96% of people born with SB also have a condition known as Chiari II Malformation. Lilly does have this condition, but I haven’t observed any symptoms at all.

Almost all people born with SB have a neurogenic bladder and neurogenic bowel. We manage Lilly’s bladder with medication (oxybutynin), and catheterize her every three hours or so. The bowel concerns are tougher to manage, and takes a lot of work, a lot of trial and error. We’re using a combination of laxatives and cone enema. Some kids (usually those in wheelchairs) need to have surgery for one or both conditions.