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Living With Spina Bifida

 Student looking for a book in the library This section of the website provides information about living with spina bifida at different ages.

Spina bifida affects the entire family. Meeting the complex needs of a person affected by spina bifida involves the whole family and can be challenging at times. However, finding resources, knowing what to expect, and planning for the future can help.

Click on one of the following links:

Newborns and Infants

Toddlers and Preschoolers

School-Aged Children

Adolescents and Teenagers

Young Adults

Nancy and ClarkRead Nancy's personal story about her son Clark who is living a full life with spina bifida. As a nurse, Nancy shares her persepctive on the importance of spina bifida research.

Be Your Own Advocate

It is very important that individuals or parents of children with spina bifida take an active role in managing their own or their child’s care. To make important decisions people need to know about spina bifida, understand the treatment options, and then make the best possible choices for their health or the health of their child. If they don’t understand a medical term or concept, they should ask their health care provider to explain. They also should take notes and ask questions during visits to the doctor or clinic.

  • CDC’s Facts and Health Issues and Treatments pages are a good starting point to learn about spina bifida.

  • The Spina Bifida Association provides information on spina bifida, and can be helpful in recommending clinics or health care providers who are experts in the care of children and adults with spina bifida.


Watch videos about living with spina bifida.

Spina Bifida Experience VideoThe Spina Bifida Experience

Individuals with spina bifida and their parents talk about their lives and spina bifida.

Spina Bifida Experience VideoManaging Medical Care

A child with spina bifida and his mom talk about how the child participates in his medical care.

Spina Bifida Experience Video Developing Independence

A mom talks about the steps their family took to encourage their son’s independence.

Spina Bifida Experience VideoPhysical Activity

Parents and individuals with spina bifida talk about the importance of physical activity.


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Contact Us:
  • Centers for Disease Control and Prevention

    National Center on Birth Defects and Developmental Disabilities

    Division of Birth Defects and Developmental Disabilities
    Divison of Human Development and Disability

    1600 Clifton Road
    MS E-87
    Atlanta, GA 30333
  • 800-CDC-INFO
    TTY: (888) 232-6348
  • Contact CDC-INFO The U.S. Government's Official Web PortalDepartment of Health and Human Services
Centers for Disease Control and Prevention   1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232-4636) TTY: (888) 232-6348 - Contact CDC-INFO