Spina bifida outcome: A 25-year prospective

Background: Open spina bifida is the most complex congenital abnormality co mpatible with long-term survival. This report outlines the 20- to 25-year o utcome 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, mobil ity, bladder/bowel continence, tethered cord, scoliosis, latex allergy, pos terior cervical decompression, tracheostomy and/or gastrostomy tube. Result s: Mortality (24%) continues to climb into young adulthood. Eighty-six perc ent of the cohort have cerebrospinal fluid diversion, with 95% having under gone at least one shunt revision. Thirty-two percent have undergone a tethe red cord release, with 97% having an improvement or stabilization in their preoperative symptoms. Forty-nine percent have scoliosis, with 43% eventual ly requiring a spinal fusion. Sixteen patients (23%) have had at least one seizure. Eighty-five percent are attending or have graduated from high scho ol and/or college. More than 80% of young adults have social bladder contin ence. 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 s pina bifida. Copyright (C) 2001 S. Karger AG, Basel.