We Advocate for, Educate and Serve People with Spina Bifida in Jacksonville, Florida

Spina Bifida Jacksonville is dedicated to supporting and encouraging individuals born with Spina Bifida and serving as a resource to their families.  Founded in 1973, Spina Bifida Jacksonville is a 501(c)(3)non-profit organization.

Whether you’re a parent expecting a baby diagnosed with a neural tube defect like Spina Bifida, or even a parent to a young adult or adult with Spina Bifida, we urge you to connect with us. You will meet other parents who can share their experiences, and offer help, support and information to you.


What is Spina Bifida?

Spina Bifida is one of the most common permanently disabling birth defects in the U.S. with an estimated 166,000 individuals currently living with Spina Bifida.

Spina Bifida is a Neural Tube Defect (NTD) resulting from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn’s back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with Spina Bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with Spina Bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called “shunting” which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with Spina Bifida live well into adulthood as a result of today’s sophisticated medical techniques.

If you’re expecting a baby with Spina Bifida, we understand you have a lot of questions and are probably feeling a lot of anxiety. Please call us at 904.697.3941 so we can help you with the journey you are beginning.


Our Mission

Spina Bifida Jacksonville advocates for, educates and serves people in the local community whose lives have been touched by Spina Bifida.