University of Illinois Extension

Spina Bifida

Spina (spine) bifida (split or divided) is a "condition resulting when the bones of the spine form abnormally and fail to unite in the midline of the back" (Woodburn, 1975). If this split occurs, the spinal cord and its coverings may bulge out through the opening and cause a lump on the back. This malforming of the spine takes place within the first 28 days of pregnancy and varies in severity from a simple lump on the back to severe malformation of the back and lower limbs.

Professor Nicholas Tulp gave spina bifida its name and gave the first formative description of the disability. Although the term and real medical description are somewhat recent, it is estimated that spina bifida occurred almost 12,000 years ago.

It is also worth noting that it wasn't until 1761 that a man named Morgagni linked lower-limb deformity and hydrocephalus (an excessive amount of cerebro-spinal fluid within the head) with spina bifida. As a result of this finding, much has been done to find a "cure" for hydrocephalus, one of the major problems associated with spina bifida. One such discovery was in the late 1950s; the Spitz-Holter valve and the ventriculatrial shunt (a bypass or replacement of a major cavity between the brain and spinal cord implanted to control the flow of the cerebro-spinal fluid, so as to prevent pressure on the brain). Because of this find and other developments, an increasing number of children survive the more severe forms of spina bifida. Of these children, about 70 percent have normal intelligence (Menelaus, 1971).


The characteristics depend on the severity, but may include no noticeable defect, a lump or cyst on the back, curvature of the spine, club or deformed feet, paralysis, lack of bladder and bowel control, hydrocephalus, and/or mental retardation. Most children with varying degrees of spina bifida usually go through some type of surgery though results vary.


Spina Bifida Cystica

Characterized by a cystic protrusion of the spinal cord, usually noticeable on the back.


  • The most serious and most common form
  • The bones, tissues, and spinal cord are all malformed; usually results in more severe deformities, paralysis, and chance of mental retardation.


  • The bones, skin, and tissues are deficient but not the spinal cord itself; usually results in weakness in legs and difficulty with bladder and bowel control.

Spina Bifida Occulta

  • The bones are deficient over a short length of the spine, but the skin and surrounding tissues are usually unaffected.
  • The most minor form


Spina bifida is believed to be caused by some environmental influence acting upon a genetically weak or susceptible embryo during the first month of pregnancy.

Help For Leaders

  • If the child uses special equipment (for examples, braces, wheelchair), know how the equipment works. Ask the child to show you how you can help.

  • Help the child feel that he or she is needed and belongs.

  • Encourage and support the child's independence and self-sufficiency.

  • Remember that a child with spina bifida may not have mental retardation.

  • Any prior and additional knowledge that can be gained about the individual child is very useful.

  • Contact should be maintained between the leader and the parent.

  • Be aware that many children with spina bifida may require surgery and/or lengthy spells of treatment; therefore, they may be behind educationally or may miss out on important activities and experiences. Try to help keep the child in touch with things while he or she is away.

  • Stress the things that the child can do, not the things he or she cannot do.

  • Let the child know that many people with physical disabilities lead useful and happy lives.