spina bifida has an extremely variable clinical course -- with the location of the spine opening being the most important factor in determining your son's clinical course. children with a very low level lesion can have very good motor skills and have very low risk for cognitive issues. children with high lesions have greater motor impairment and are at increased risk for additional problems. in addition to motor problems the bowel and bladder are also affected. iq and schoool aptitude can be affected as well. since so many parts of the body are affected you will likely need to consult with a range of pediatric specialsists including a neurosurgeon a urologist a physical medicine doctor and either a neurologist or developmental pediatrician. your child's care is likely best provided in a major medical setting teaching hospital or children's hospital. you are going to need to find good doctors whom you can trust. spina bifida (also known as meningomyelocele) is a relatively rare and complicated disorder about which much is known. fortunately although we do not have a "cure" much can be done to help children with spina bifida.
my baby was diagnosed with spina bifida. what should i be doing to prepare for his birth and follow-up care?