Spina Bifida FAQs and Guides


Spina bifida is a neural tube defect that occurs within the first four weeks after conception. It is a neurological condition that people are born with. A portion of the neural tube does not develop or close properly. Bone, muscle and skin cannot form around the spinal cord where the opening occurred and nerves surrounding the area may be damaged or improperly formed.
Approximately 26 in 100,000 babies in Canada are born with some form of spina bifida.
The exact cause is not known. Development of spina bifida is the result of a number of factors. These may include genetics, the mother’s diet, a lack of folic acid and several unidentified environmental factors present before and during conception and in early pregnancy may contribute to the development of the condition.
There is still much to learn about the prevention of spina bifida. However, medical research has proven that folic acid can reduce the risk of having a neural tube defect (NTDs) affected pregnancy, by as much as 70%. Folic acid is essential for the development of a baby’s spine, brain and skull in the early weeks of pregnancy. Any woman who can become pregnant risks having a baby with an NTD. It is recommended that all women who can become pregnant take a multivitamin with at least 0.4 mg of folic acid every day.

Breakthrough treatment of in-utero fetal surgery to close the baby’s back while they are still in the womb may prevent further damage and offer better results than a traditional postnatal repair. It may also reduce the development of hydrocephalus and improve mobility outcomes.
Spina bifida is a life-long chronic neurological condition that can result in mild to severe paralysis depending on the extent of nerve damage and location of the cele. The impact may include partial or total paralysis, loss of sensation in lower extremities, challenges with bowel and bladder function, difficulty with hand skills, vision and hearing, learning, social skills, memory and problem solving are also common.
People with spina bifida require life-long medical care. Treatment occurs shortly after birth for babies who have not had the in-utero fetal surgery and whose spinal cord and nerves are exposed. Surgery is performed by a neurosurgeon to close the opening and reduce the risk of further damage to the spinal cord and nerves. A person with spina bifida, will likely require bowel, bladder and orthopedic treatment throughout their life-span. Many while also need physical therapy, mobility supports such as braces, crutches, walkers or wheelchairs at various stages of life.
50% of people with spina bifida will develop osteoporosis. Research shows that it occurs at a younger than the general population. Children and adults with spina bifida have lower bone density in their lumbar spine and in their hips than the general population. This is true for those who ambulate and those who use wheelchairs, but is higher in those that don’t walk. Decreased bone density may also be due to medical conditions, medications or surgeries.
Studies indicate that up to 73% of individuals with spina bifida have a latex sensitivity and/or allergy. Latex is the sap from the rubber tree. It is used in a variety of common items like balloons, erasers, surgical gloves, contraceptives and elastic fabrics. Sensitivity to latex may cause symptoms such as watery eyes, runny nose, sneezing, rashes, hives, swelling and itching on contact and in severe cases, respiratory distress. Unfortunately, as with most allergies, the only effective treatment is avoidance. Using latex free products as much as possible is recommended. Consult an allergist for further information.
Occulta is a minor deformity of one or two vertebrae that doesn’t get much attention, yet it can significantly decrease quality of life and cause pain for those who develop secondary neurological issues such as tethered cord. This can become a serious issue and requires a thorough neurosurgical assessment of symptoms and most likely an MRI or CT scan to determine what is causing the pain and what treatments are available.

Spina Bifida Guides and Resources

Neurological Issue
Understanding Learning Issues with Spina Bifida
Special Equipment and Mobility Aids
Understanding Bowel Function
Understanding Bladder Function