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:
Sac on Back
Changes/Loss in Function
Spina Bifida Occulta (“hidden”)
No sacMay be a hairy patch, cleft or birthmark
RareUsually no serious problems
Difficult 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 control
Surgery 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 sac
May be mild, moderate or severe loss of sensation/movement, bladder and bowel control and other related complications
Surgery 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
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)
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
Spina bifida can be diagnosed prenatally using the following testing:
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.
Sound waves (not x-ray) used to take a picture of the baby during pregnancy.
This test is done at 14-16 weeks of pregnancy
The doctor takes fluid from the amniotic sac which holds the baby.
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
Sensory and motor loss
Arnold Chiari Malformation
Tethered Cord (scars, cysts, fatty tumors)
Orthopedic problems: scoliosis, kyphosis, lordosis, leg fractures, dislocation of hips, contractures, club feet
Nutrition/fitness/weight control problems
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:
Independence in activities of daily living
Educational and vocational training and opportunities, etc.
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.