Spina Bifida Association of Georgia

Spina Bifida Fact Sheet

Developed/written by:
Ginny Posid, RN, BSN, MPH
Nursing Consultant, Spina Bifida Association of Georgia

Overview of Spina Bifida

Spina bifida is a neural tube defect that affects the development of the spinal cord, its membrane (lining), the spinal nerves and the backbone. Spina bifida affects 1 in 2,500 births in the United States. Other facts about spina bifida include:

  • The bones in the spine (vertebrae) do not close or only partially close.
  • Spina bifida can be mild to severe depending on the type of spina bifida defect, how big it is, where it is and if there are other problems.
  • Spina bifida is also called open spine, myelomeningocele, neural tube defect and myelodysplasia.

There are three types of spina bifida. The following chart describes and compares the three:

TypesSac on BackChanges/Loss in FunctionComments
Spina Bifida Occulta (“hidden”)No sacMay be a hairy patch, cleft or birthmarkRareUsually no serious problemsDifficult to diagnoseMay have back or leg pain following an injury in later lifePrognosis – very good/excellent
Spina Bifida Manifesta with Meningocele (4-6%)   Sac filled with spinal fluid and meninges (membranes)May be mild to moderate loss of sensation/movement, bladder and bowel controlSurgery to close back and preserve functionHydrocephalus rareIQ usually normalPrognosis – Good
Spina Bifida Manifesta with Myelomeningocele (94-96%)Sac filled with spinal fluid, nerves and/or spinal cordMay have “open” spine instead of sacMay be mild, moderate or severe loss of sensation/movement, bladder and bowel control and other related complicationsSurgery to repair back within 24-48 hours after birthHydrocephalus commonIQ may be affectedLearning disabilities are often presentPrognosis – usually good but depends on level of disability, related problems and medical status

Causes

Spina bifida is causes by a combination of genetic and environmental factors. Spina bifida has been found to be related to:

  • Geography (higher in the eastern and southern U.S., higher in Ireland, England, Wales)
  • Nationality (i.e., higher in Celtic background – English, Irish, Scottish)
  • Nutrition (i.e., low folic acid, high in nitrates or poor nutrition
  • Drugs, medicine, alcohol
  • Birth order (higher in firstborns in industrial areas)
  • Family history of spina bifida
  • Race (higher in Hispanics and whites)
  • Seasonality (higher if conceived in winter and early spring)

Genetics/Risk Factors

The risk of having a baby with spina bifida is higher if:

  • Previous pregnancy/birth of child with spina bifida
  • Siblings have child with spina bifida
  • Parents have spina bifida
  • Person has spina bifida

Diagnosis

Spina bifida can be diagnosed prenatally using the following testing:

  • AFP (alphafetaprotein)
    • This is a blood test done on mother at 16-18 weeks of pregnancy.
    • If AFP is high, other tests need to be done.
    • Small, closed defects may give incorrect “normal” results.
  • Ultrasound
    • Sound waves (not x-ray) used to take a picture of the baby during pregnancy.
  • Amniocentesis
    • This test is done at 14-16 weeks of pregnancy
    • The doctor takes fluid from the amniotic sac which holds the baby.

Treatment

Children with spina bifida typically require a variety of types of treatment which include:

  • Closure of the back
  • Shunt (for hydrocephalus)
  • Bladder and bowel management training
  • Orthopedic services (bones, mobility)
  • Urology services (bladder/kidney)
  • Neurosurgery services (back, shunt, Arnold Chiari)
  • Medical/nursing, educational, recreational, social independence training and support as needed

Potential/Common Complications Related to Spina Bifida

Children with spina bifida may have one or more of these problems/ complications. There is more specific information available on each of these topics. Call your doctor or the Spina Bifida Association of Georgia for this information.

  • Changes in sensory, motor, reflex functions secondary to spinal cord injury
  • Hydrocephalus/shunts
  • Sensory and motor loss
  • Arnold Chiari Malformation
  • Tethered Cord (scars, cysts, fatty tumors)
  • Bladder Incontinence
  • Bowel Incontinence
  • Mobility problems
  • Orthopedic problems: scoliosis, kyphosis, lordosis, leg fractures, dislocation of hips, contractures, club feet
  • Nutrition/fitness/weight control problems
  • Gagging/swallowing problems/vomiting
  • Sexuality/Puberty (Precocious)
  • Latex Allergy
  • Seizures
  • Skin breakdown
  • Social/communication problems
  • Recreation/leisure problems
  • Independence problems
  • Educational/vocational problems
  • Learning Disabilities

Prognosis

The prognosis for people born with spina bifida is much improved from the past. Life expectancy is normal for most children born today with spina bifida. The prognosis is influenced by many factors, including:

  • Medical status/complications
  • Independence in activities of daily living
  • Educational and vocational training and opportunities, etc.

Prevention

Researchers have found that 400 mcg of folic acid taken daily prior to and in the first three months of pregnancy can reduce the risk of having a baby with spina bifida by 50-75%. Since more than 50% of pregnancies in the U.S. are unplanned, all women of childbearing age should take a folic acid supplement or multivitamin with folic acid daily whether or not they are planning a pregnancy. In addition, women should eat a healthy diet which includes folic acid rich foods such as some cereals, orange juice, strawberries, raw spinach, dry beans, turnip greens and romaine lettuce.

For more information about spina bifida, prevention or available resources, call the Spina Bifida Association of Georgia at 770-454-7600. 

Adapted from Shepherd Center Homecare Manual and Training Materials and Spina Bifida Association of Georgia Professional Training Packets.

Copyrighted 1999, SBAG January 1999