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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 perspective 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.