The facts

  • Spina Bifida or Myelomeningocle means “split spine.” In babies born with the birth defect, the spine is never fully developed or damaged not allowing it to get messages to and from the brain.  It is one of the most common birth defects in the U.S.
  • There is no cause for Spina Bifida.  One link that has been found is the possible lack of folic acid in the mother’s diet.  Since the abnormal growth that leads to the birth defect begins in the first trimester, which is why it is important that a women whoa re trying to get pregnant take a folic acid supplement.  There is no definitive cause however.
  • You can test during your pregnancy for Spina Bifida and other birth defects.  Around 15 weeks gestation the mother’s blood can be tested.  If there is a positive result the pregnancy would be considered “high risk” and would require routine ultra sounds and other possible studies.
  • Once Spina Bifida is detected it can not be cured.  There are many corrective surgeries to help the child’s quality of life but there is no surgery to help correct any nerve damage that may occur.
  • There are varying degrees of Spina Bifida.
    • Occulta is the mildest and most common form in which one or more vertebrae are malformed.  The name “occulta,” which means “hidden,” indicates that a layer of skin covers the malformation, or opening in the vertebrae.  This form of spina bifida, present in 10-20 percent of the general population, rarely causes disability or symptoms.
    • Meningocele, spinal fluid and meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin.   Some individuals with meningocele may have few or no symptoms while others may experience such symptoms as complete paralysis with bladder and bowel dysfunction.
    • Myelomeningocele, the third form, is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening.  The impairment may be so severe that the affected individual is unable to walk and may have bladder and bowel dysfunction.  This is the type that I have.  At L5 S1 which happens to be low enough on my spine to not affect my motor functions too much.
  • Selected medical centers continue to perform fetal surgery for treatment of myelomeningocele through a National Institutes of Health experts. Fetal surgery is performed in utero (within the uterus) and involves opening the mother’s abdomen and uterus and sewing shut the abnormal opening over the developing baby’s spinal cord.  Some doctors believe the earlier the defect is corrected, the better the baby’s outcome.   Although the procedure cannot restore lost neurological function, it may prevent additional loss from occurring.
  • Twenty to 50 percent of children with myelomeningocele develop a condition called progressive tethering, or tethered cord syndrome; their spinal cord become fastened to an immovable structure—such as overlying membranes and vertebrae—causing the spinal cord to become abnormally stretched with the child’s growth.  This condition can cause loss of muscle function to the legs, as well as changes in bowel and bladder function.  Early surgery on a tethered spinal cord may allow the child to return to their baseline level of functioning andprevent further neurological deterioration.
  • Some children will need subsequent surgeries to manage problems with the feet, hips, or spine.  Individuals with hydrocephalus generally will require additional surgeries to replace the shunt, which can be outgrown or become clogged or infected.
  • Complications of spina bifida can range from minor physical problems with little functional impairment to severe physical and mental disabilities.   It is important to note, however, that most people with spina bifida are of normal intelligence.  Spina bifida’s impact is determined by the size and location of the malformation, whether it covered, and which spinal nerves are involved.  All nerves located below the malformation are affected to some degree.  Therefore, the higher the malformation occurs on the back, the greater the amount of nerve damage and loss of muscle function and sensation.
  • In addition to abnormal sensation and paralysis, another neurological complication associated with spina bifida is Chiari II malformation—a condition common in children with myelomeningocele—in which the brain stem and the cerebellum (hindbrain) protrude downward into the spinal canal or neck area.  This condition can lead to compression of the spinal cord and cause a variety of symptoms including difficulties with feeding, swallowing, and breathing control; choking; and changes in upper arm function (stiffness, weakness).
  • Chiari II malformation may also result in a blockage of cerebrospinal fluid, causing a condition called hydrocephalus, which is an abnormal buildup of cerebrospinal fluid in and around the brain.  Cerebrospinal fluid is a clear liquid that surrounds the brain and spinal cord.  The buildup of fluid puts damaging pressure on these structures.  Hydrocephalus is commonly treated by surgically implanting a shunt—a hollow tube—in the brain to drain the excess fluid into the abdomen.
  • Children with both myelomeningocele and hydrocephalus may have learning disabilities, including difficulty paying attention, problems with language and reading comprehension, and trouble learning math.
  • Additional problems such as latex allergies, skin problems, gastrointestinal conditions, and depression may occur as children with spina bifida get older.
  • Treatment for bladder and bowel problems caused by Spina Bifida typically begins soon after birth, and may include bladder catheterizations and bowel management regimens.

References:  National Institute for Neurological Disorders and Stroke