Spina Bifida: Myths and Misconceptions Explained

Spina bifida is a relatively common birth defect, with an estimated 1,500 to 2,000 babies born with spina bifida in the U.S. each year. Despite its prevalence, there are many misconceptions surrounding this condition. 

Lurie Children's multidisciplinary Spina Bifida Center provides comprehensive care for children and adolescents with spina bifida, tethered spinal cords and other types of congenital spinal anomalies. Additionally, prenatal experts at The Chicago Institute for Fetal Health at Lurie Children’s can help identify and treat spina bifida in utero.  

Below, Lurie Children’s spina bifida experts Dr. Robin Bowman and Colleen Rosen, MSN, APRN-NP, PNP-BC, address some common myths and misconceptions about spina bifida: 

Myth: Spina bifida is always fatal.  

Fact: While spina bifida itself is not fatal, the severity of the condition can vary greatly, and complications associated with it can be life-threatening. However, with proper medical care and support, most children with spina bifida can live long and fulfilling lives.  

Myth: A parent’s actions can cause spina bifida.  

Fact: Spina bifida is a complex birth defect that results from a combination of genetic and environmental factors. While certain factors, such as folic acid deficiency or exposure to certain medications, can increase the risk, they do not cause the condition. Parents should not feel guilty or blame themselves for the occurrence of spina bifida. 

Myth: All children with spina bifida will have cognitive impairments. 

Fact: Most children with spina bifida have normal learning abilities, but some may have learning and social challenges. The extent of cognitive impairment, if present, varies between individuals. Due to the Chiari II malformation that is present with the diagnosis of spina bifida, some things like executive function (problem solving, planning, organizing) can be challenging for individuals with spina bifida. With early intervention and appropriate support, many children with spina bifida can achieve normal or near normal cognitive function, and adults with spina bifida can work and live independently.  

Myth: All children with spina bifida will be wheelchair-dependent.  

Fact: The degree of physical disability associated with spina bifida varies greatly between individual to individual. Some factors that may impact physical ability depends on the location of the spinal cord defect, and the severity of the Chiari II malformation. While some individuals may require a wheelchair for mobility, others may walk with braces or crutches.   

Myth: Life with spina bifida is always challenging and limited.  

Fact: While there will be challenges, many people with spina bifida lead fulfilling and independent lives. With appropriate medical care, support and early intervention, individuals with spina bifida can overcome challenges and live very rewarding lives. 

The key to a fulfilling life with spina bifida is early intervention, comprehensive and timely medical care, and a positive attitude. With the right support, individuals with spina bifida can overcome challenges and live rewarding lives. 

Learn more about Lurie Children’s multidisciplinary approach to spina bifida care in an episode of our podcast, Precision: Perspective’s on Children’s Surgery. 

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