Dear Jeanette:
The very first thing to do is to find out if it is spina bifida (or spinal cord dysraphism) or just a tchnical error. I would go to a major medical center or teaching hospital and confirm the diagnosis. If it is spina bifida, then talk to a perinatologist. There is usually an associated Chiari II malformation, where the cerebellum and lower brainstem is in the spinal canal. This usually results in hydrocephalus (increased fluid in the CSF spaces in the brain. This will likely also have to be fixed surgically (may or may not be, it depends on how bad the Chiari II malformation is). The spina bifida has different prognoses depending on how extensive the malformation of the spinal cord development is, and this is why it is important to find out about the diagnosis. There are several places that have had fair success with in utero surgery for this condition (Univ. Penn). Many, but certainly not the overwhelming majority have cognitive dysfunction. There is an associated loss/problems with bladder function. Thera may be problems with walking and sensation below the area of the spina bifida.
The intial thing to do is to verify the abnormality. Check to see if there is an associated Chiari II malformation (I would be very surprised it there wasn't) and then check for other abnormalities.
Sincerely,
CCF Neuro MD