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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
Insights
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.
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.