title: Spina bifida outcome: a 25-year prospective.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Pediatric Neurosurgery, Children's Memorial Hospital, Northwestern University Medical School, Chicago, IL 60614, USA. r-bowman@nwu.edu
authors.forename: R M
authors.initials: RM
authors.lastname: Bowman
authors.forename: D G
authors.initials: DG
authors.lastname: McLone
authors.forename: J A
authors.initials: JA
authors.lastname: Grant
authors.forename: T
authors.initials: T
authors.lastname: Tomita
authors.forename: J A
authors.initials: JA
authors.lastname: Ito
mesh_terms: D000328:Adult; D002391:Catchment Area, Health; D002557:Cerebrospinal Fluid Shunts; D004522:Educational Status; D004651:Employment / Q000706:statistics & numerical data; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007087:Illinois / Q000453:epidemiology; D007231:Infant, Newborn; D020315:Latex Hypersensitivity / Q000453:epidemiology; D008297:Male; D019957:Motor Skills Disorders / Q000175:diagnosis / Q000453:epidemiology; D011446:Prospective Studies; D012111:Residence Characteristics; D016136:Spina Bifida Occulta / Q000453:epidemiology* / Q000401:mortality / Q000601:surgery; D015996:Survival Rate; D013997:Time Factors