What is Spina Bifida?

We often get questions about Denis while we are out and about.  He is a bright and engaging kid and who doesn't love that bright red hair?!  Kids tend to ask about his wheelchair, which doesn't bother us or him in the slightest.  He LOVES to show off his light up caster wheels and do wheelies and spin circles for people.  We often get asked "What is wrong with him?" and while I know that isn't "PC" terminology, I would rather educate on SB than PC.  What has surprised me most is how little people know or have heard of spina bifida!

Spina bifida is the most common neural tube defect, and happens every 1 in every 1000 births.  There are 5 types of spina bifida: spina bifida occulta, closed neural tube defects, meningocele, and myelomeningocele.

Spina bifida occulta is the least severe, and occurs when the vertebrae don't close around the spinal cord all the way.  The spinal cord and the sac around it, called the meninges, are not affects.  Sometimes, people with SBO can have some symptoms, such as back pain, tethered cord, and bladder and bowel control issue.  10-20% of people have SBO with no symptoms, and find out only after an Xray or other diagnostic test for another problem and the radiologist detects the SBO.  Autumn, our second daughter, has SBO that was detected at an xray for another problem she was having, and has no symptoms!

Closed neural tube defects occur when fat, bone or meninges are damaged, but the skin is unharmed.  People can have bowel and bladder control issues and partial paralysis from this kind of SB.

Meningocele is an opening in the vertebrae and skin where the spinal fluid and the meninges protrudes outside the body but the spinal cord remains intact and inside the spinal column. Symptoms vary with meningocele, from very few symptoms to paralysis.

Myelomeningocele is the most sever type of spina bifida. The defect in the spine and the skin allow the spinal cord to protrude outside the body.  The spinal cord is further damaged by amniotic fluid and the effect is severe paralysis from the lesion down and neurogenic bowel and bladder.  Denis has this type of spina bifida.

When the meninges are damaged, this can cause a problem with flow of the cerebro-spinal fluid that protects the brain and spinal cord. This causes a blockage and build-up of the CSF and can cause a condition called hydrocephalus.  When a baby has hydrocephalus, the doctors place a tube called a ventriculoperitoneal shunt.  The shunt drains CSF from the brain to the abdominal cavity, where it is absorbed by the body harmlessly.  Denis also has a VP shunt.

The level that the spine is affected correlates with the severity of the person's disability.  Some people with very low lesions can walk with out assistance.  The higher the lesion, the more muscles and nerves are affected and the more likely the child will need mobility assistance.  Denis's lesion starts at L2-3 and goes all the way down to S3-4.  He has weak quads and hip flexors, but feels nothing below mid thigh, and can't move from the knee down or from the waist down on his backside.

There is an awesome explanation of the levels of sensory and mobility at another blog called About Spina Bifida!