Spina Bifida

Spina Bifida & Hydrocephalus Association of Ontario

For more than 35 years, the Spina Bifida & Hydrocephalus Association of Ontario (SB&H), has been committed to making a positive difference in the lives of individuals with spina bifida and/or hydrocephalus. SB&H was incorporated as a registered charity in 1973 and is governed by a...

Learn more about the Spina Bifida & Hydrocephalus Association of Ontario.

Printer-friendly version

Spina bifida is a neural tube birth defect (NTD) that occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system. Infants born with spina bifida may have an open lesion on their spine where significant damage to the nerves and spinal cord occurs. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion. Even with no visible lesion, there may be improperly formed or missing vertebrae, and accompanying nerve damage.

The three most common types of spina bifida are:

• Myelomeningocele (my'-low-meh-nin'-go-seal) Myelomeningocele is the most severe form in which the spinal cord and its protective covering, the meninges, protrude from the opening in the spine.
• Meningocele (meh-nin'-go-seal) Meningocele spinal cords develop normally, but only the meninges protrudes from the opening created by damaged or missing vertebrae and may be exposed.
• Occulta (oh-kul'-tah) Occulta, which means "hidden", indicates that the defect, where one or more vertebrae are malformed, is covered by a layer of skin. Occulta is the mildest form.

There is no single known cause of spina bifida. Researchers are studying the effects of heredity, nutrition, environment and pollution, which could lead to physical damage to the fetus.

Treatment involves surgery and therapy to minimize further neurological damage and address the resulting conditions. Treatment for the variety of effects of spina bifida and hydrocephalus can also include medication, physiotherapy and the use of assistive devices.

Many people with spina bifida will need mobility supports such as braces, crutches, or wheelchairs. Almost all will have some form of bladder or bowel dysfunction, conditions which they must learn to control and manage.

There is no cure. Ongoing therapy, medical care and/or surgical treatments will be necessary to help prevent and manage complications and secondary conditions throughout an individual's life.

Just fifty years ago, only 10% of babies born with spina bifida survived their first year. Today, with research and advances in medical technology, 90% survive and thrive!