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Living with Spina Bifida

Individuals with spina bifida can have vastly varying degrees of impairment, from virtually no impairment to severe sensory, motor, autonomic and cognitive impairment. Myelomeningocele is the most severe form of spina bifida where many systems can be impacted in direct relation to how severe the abnormality is and where it occurs. Generally speaking, the higher the abnormality is on the spinal cord, the more systems that are involved. Some common problems/conditions that individuals born with spina bifida experience include:

  • Allergic reactions caused by prolonged exposure to latex
  • Bladder, bowel and kidney problems
  • Eye problems
  • Fractures
  • Hydrocephalus (excess fluid on the brain)
  • Learning disorders
  • Seizures
  • Skin problems
  • Tethered spinal cord
  • Social skills deficits
  • Weight gain/obesity
  • Depression and other psychological / psychiatric issues

It is likely that a child born with spina bifida will require numerous surgeries over the course of his/her life. Frequent hospitalizations require a great commitment of time, finances and energy on the part of the family and/or caregiver and can have quite an emotional impact on the family. There are local and national support groups available to parents and caregivers and the Spina Bifida Association of Western PA can offer suggestions for additional support.

Just as surgeries and hospitalizations impact families, they also take a physical and emotional toll on the individual with spina bifida. A loving and supportive family is only one critical factor in the emotional development and well being of a child born with spina bifida. Interaction and socialization with peers apart from a family setting is equally vital to his/her development. Camps and retreats specifically created for individuals with spina bifida, such as those offered year-round by the Spina Bifida Association of Western PA, provide an encouraging, supportive environment where children can make friends and learn how to care for themselves. Sometimes attending a camp or retreat is the first exposure a child has to others with the same challenges as him/her.

Common Physical Characteristics
Because of surgery performed to repair the spinal cord, individuals with spina bifida are often short in stature. Limited mobility and lower metabolic rate due to the condition often result in a greater likelihood of obesity.