A systematic review of 28 studies found that sleep disordered breathing affects 46-100% of infants with postnatal myelomeningocele repair and 92-97% of those with prenatal repair, with mortality rates in infancy ranging from 0-69%.
- Sleep disordered breathing is extremely common in children with myelomeningocele, affecting nearly all infants who had prenatal repair
- Mortality from sleep breathing problems in infancy can be as high as 69% in some populations
- Experts recommend screening at three specific ages: before NICU discharge, at 3-4 years, and at 8-11 years
How this compares to prior research
Previous research established that children with myelomeningocele face elevated risk for sleep disordered breathing, but the exact prevalence and optimal screening timing were unclear. Earlier studies suggested sleep problems were common in this population, but comprehensive data across different age groups and repair types was lacking. This systematic review synthesizes 28 studies to provide the first evidence-based screening recommendations for this vulnerable population.
Sleep disordered breathing prevalence trends, global data, 1990-1999
Key findings
- Among infants with postnatal repair of myelomeningocele, 46-100% had sleep disordered breathing, while 92-97% of those with prenatal repair were affected
- Central sleep apnea was typically diagnosed earlier (around 3-4.7 years) than obstructive sleep apnea (around 8.5-11.5 years)
- Adolescents with myelomeningocele, particularly females, experienced poorer sleep quality and quantity starting at an earlier age than typically developing peers
What this means in practice
- Ask your child\’s doctor about sleep screening if your child has myelomeningocele, even without obvious symptoms
- Consider scheduling sleep studies at the three recommended ages: before NICU discharge, 3-4 years, and 8-11 years
- Monitor for poor sleep quality in adolescents with myelomeningocele, as it may affect executive functioning and learning
Frequently asked questions
What is myelomeningocele?
Myelomeningocele is the most severe form of spina bifida, a birth defect where the spinal cord and nerves develop outside the body through an opening in the spine.
When should children with myelomeningocele be screened for sleep problems?
Children should be screened three times: before leaving the NICU, between ages 3-4 years, and again between ages 8-11 years, regardless of whether they show symptoms.
Does prenatal repair of myelomeningocele reduce sleep breathing problems?
No, the review found that 92-97% of infants with prenatal repair still developed sleep disordered breathing, compared to 46-100% with postnatal repair.
Key terms explained
Myelomeningocele
The most severe form of spina bifida where the spinal cord protrudes through an opening in the spine
Central sleep apnea
A breathing disorder where the brain fails to send proper signals to breathing muscles during sleep
Obstructive sleep apnea
A condition where the airway becomes blocked during sleep, causing breathing to stop and start repeatedly
Source: Sleep disordered breathing and myelomeningocele in the era of prenatal repair: A systematic review towards evidence-informed care. · DOI: doi: 10.1016/j.sleep.2026.108815