Spina bifida outcome: a 25-year prospective

Pediatr Neurosurg. 2001 Mar;34(3):114-20. doi: 10.1159/000056005.

Abstract

Background: Open spina bifida is the most complex congenital abnormality compatible with long-term survival. This report outlines the 20- to 25-year outcome for our original cohort of patients with a myelomeningocele treated in a nonselective, prospective manner.

Methods: Of the initial 118 children, 71 patients were available for our most recent review. Nineteen patients have been lost to follow-up and 28 patients have died. Data were collected on: motor level, shunt status, education/employment, seizure history, mobility, bladder/bowel continence, tethered cord, scoliosis, latex allergy, posterior cervical decompression, tracheostomy and/or gastrostomy tube.

Results: Mortality (24%) continues to climb into young adulthood. Eighty-six percent of the cohort have cerebrospinal fluid diversion, with 95% having undergone at least one shunt revision. Thirty-two percent have undergone a tethered cord release, with 97% having an improvement or stabilization in their preoperative symptoms. Forty-nine percent have scoliosis, with 43% eventually requiring a spinal fusion. Sixteen patients (23%) have had at least one seizure. Eighty-five percent are attending or have graduated from high school and/or college. More than 80% of young adults have social bladder continence. Approximately 1/3 of patients are allergic to latex, with 6 patients having experienced a life-threatening reaction.

Conclusion: At least 75% of children born with a myelomeningocele can be expected to reach their early adult years. Late deterioration is common. One of the greatest challenges in medicine today is establishing a network of care for these adults with spina bifida.

MeSH terms

  • Adult
  • Catchment Area, Health
  • Cerebrospinal Fluid Shunts
  • Educational Status
  • Employment / statistics & numerical data
  • Female
  • Follow-Up Studies
  • Humans
  • Illinois / epidemiology
  • Infant, Newborn
  • Latex Hypersensitivity / epidemiology
  • Male
  • Motor Skills Disorders / diagnosis
  • Motor Skills Disorders / epidemiology
  • Prospective Studies
  • Residence Characteristics
  • Spina Bifida Occulta / epidemiology*
  • Spina Bifida Occulta / mortality
  • Spina Bifida Occulta / surgery
  • Survival Rate
  • Time Factors