Understanding Spina Bifida

Spina bifida is a type of neural tube defect that affects the spine.1   It is also known as cleft spine or split spine, and occurs when the fetus’s spine does not close properly during the first month of pregnancy.2 This results in damage to the spinal cord and nerves, often leading to physical and mental disabilities that range from mild to severe.1 The severity depends on the size and location of the opening in the spine and whether the spinal cord and nerves are affected.1

Spina bifida can be diagnosed during pregnancy or after the baby is born. Treatment options vary depending on the severity of the condition. Surgery may be done soon after birth.3  Some mild forms of spina bifida may not need to be treated.4

The exact cause of spina bifida is unknown, but scientists believe that genetic and environmental factors act together to cause the condition. There is no cure, but with proper treatment and support, many children with spina bifida do well in school and go on to lead full lives.4

Fact Sheets and Frequently Asked Questions

• Facts sheets about spina bifida have been prepared by The Spina Bifida Association, The National Institute of Neurological Disorders and Stroke, and the Centers For Disease Control and Prevention.
• For information about spina bifida in Spanish, visit the Spina Bifida Association en Español or the National Institute of Neurological Disorders and Stroke fact sheet en Español.

Other Resources

• March of Dimes strives to help women have full-term pregnancies and is dedicated to researching problems that threaten the overall health and well being of babies.
• A list of medical facilities across North Carolina that specialize in working with individuals with spina bifida is available.
• NC Health Info is an online guide to websites of quality health and medical information and local services throughout North Carolina and is also available in Spanish.

Advocacy and Social Connections

• To connect with other parents/families who have a child with spina bifida, contact the Family Support NetworkTM of North Carolina.
• The Spina Bifida Association (SBA) serves adults and children who live with spina bifida.  The SBA is a voluntary health agency dedicated to enhancing the lives of those with spina bifida and those whose lives are touched by it.  Its tools are education, advocacy, research, and service.

References