National Spina Bifida Month is observed every year during October. According to the National Institutes of Neurological Disorders and Stroke, spina bifida “is the most common neural tube defect in the United States—affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year.” To commemorate National Spina Bifida Month, we’ve compiled the following summary of information about this disorder. We at Enabling Devices hope that raising awareness about spina bifida will create a more accessible and supportive society for those who live with it.
Spina bifida (literally defined as cleft spine) is a condition that typically occurs in the first month of pregnancy when the fetus is just beginning to develop in the mother’s womb. In spina bifida, the fetus’s neural tube doesn’t close as it should. Though we don’t know exactly what causes spina bifida, most scientists believe it is due to a combination of genetic and environmental factors. Prenatal testing often reveals the presence of spina bifida and babies with the disorder usually undergo surgery to close the spine and minimize complications very soon after birth.
Depending on where the opening of the fetus’s spine is located and how big the opening is, the effects of spina bifida can range from mild to severe. NINDS identifies four types of spina bifida.
The mildest form of spina bifida, occulta (hidden) spina bifida results in the malformation of one or more vertebrae. The malformation is covered by a layer of skin and the neural elements are not exposed. Affecting 10-20 percent of the general population, this type of spina bifida almost never causes symptoms or disability. In fact, individuals with occulta spina bifida many not know that they have it.
Closed neural tube defects
In this type of spina bifida, various spinal defects may exist but the neural elements are covered. Though some people with closed neural tube defects don’t experience significant problems, in others, it can cause partial paralysis, bladder and bowel dysfunction.
As defined by NINDS, in meningocele spina bifida, “spinal fluid and meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin,” In this type of spina bifida, symptoms range from mild or non-existent to complete paralysis.
The most disabling form of spina bifida. myelomeningocele spina bifida “happens when parts of the spinal cord and nerves come through the open part of the spine,” according to the Spina Bifida Association. This causes damage to the nerves and partial or full paralysis below the location of the spinal opening. Myelomeningocele spina bifida may also cause a neurological condition known as Chiari II malformation. Chiari II causes compression of the spine and can lead to feeding, swallowing and breathing problems as well as hydrocephalus or spinal fluid accumulation on the brain. This can result in learning disabilities.
There is no cure for spina bifida but children with the disorder are typically of average intelligence and can lead robust and productive lives. Organizations like the Spina Bifida Association “are committed to helping people live longer healthier lives through research, advocacy, education and support.” Each October, the Spina Bifida Association sponsors Walk-n-Roll events across the country to raise money and awareness about the disorder. To locate in a Walk-n-Roll event in your area, visit SBA’s events page. Other ways to support people with spina bifida include participating in SBA’s online advocacy efforts or planning a community awareness day. You can also share your spina bifida story at hashtag #MySBStory.
For more ways to get involved, visit spinabifidaassociation.org.