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Spina bifida outcome: a 25-year prospective
R M Bowman1, D G McLone, J A Grant
1Division of Pediatric Neurosurgery, Children's Memorial Hospital, Northwestern University Medical School, Chicago, IL 60614, USA. r-bowman@nwu.edu
Pediatric Neurosurgery
|May 19, 2001
Summary
Long-term survival for open spina bifida (myelomeningocele) patients is over 75% into adulthood, but late complications are frequent. Establishing adult care networks is crucial for managing these complex congenital conditions.
Area of Science:
- Neurology
- Pediatric Surgery
- Developmental Biology
Background:
- Open spina bifida, specifically myelomeningocele, represents a significant congenital abnormality with long-term survival implications.
- This study examines the long-term outcomes of a cohort of myelomeningocele patients treated prospectively.
Purpose of the Study:
- To evaluate the 20- to 25-year outcomes in patients with myelomeningocele.
- To identify common complications and functional status in young adults with spina bifida.
Main Methods:
- A prospective cohort of 118 myelomeningocele patients was reviewed.
- Seventy-one patients were available for follow-up, with data collected on motor level, shunt status, education, mobility, continence, and surgical interventions.
- Mortality and complication rates were analyzed over a 20-25 year period.
Main Results:
- Mortality reached 24% by young adulthood, with 86% requiring cerebrospinal fluid diversion (95% shunt revisions).
- Tethered cord release (32%) improved symptoms in 97%, while 49% developed scoliosis (43% requiring fusion).
- 23% experienced seizures, 85% achieved high school/college education, and over 80% had social bladder continence. Latex allergy affected ~33%.
Conclusions:
- Over 75% of children with myelomeningocele survive into early adulthood.
- Late deterioration and complications are common, necessitating ongoing monitoring.
- Developing specialized care networks for adults with spina bifida is a critical unmet need.