Understanding Spina Bifida

Spina bifida is a condition that people are born with and affects them throughout their lives. It is not a disease and cannot be spread like an infection or illness.

Spina bifida is a neural tube defect (NTD). The neural tube develops into the brain, the long bundle of nerves that make up the spinal cord, and the tissues that enclose them. With spina bifida, an incomplete formation of the spinal cord creates an opening through which nerves and spinal fluid may protrude. A sac covered by skin or a thin membrane called a cele forms on the unborn baby’s back. Nerves around the cele may be damaged or improperly formed.

The location of the cele determines the number of spinal nerves involved. The impact on a person can range from mild to severe and may include:

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Types of Spina Bifida

Spina bifida is a life-long condition with ongoing medical challenges. Each of the four main types of spina bifida, listed below, affect individuals differently.

OCCULTA results in the hole in the lower segment of the spine and the bones are not properly closed. It may involve an abnormality of the vertebrae or vertebrae and spinal cord. Many people with this condition only become aware of it if they experience unexplained incontinence, chronic back pain, or changes in the muscles of their legs.

LIPOMYELOMENINGOCELE causes abnormal fatty tissue to protrude through a defect in the vertebrae that forms in the buttocks or lower spine. Damage to the nerves may occur from compression of the nerves by the fatty mass or abnormal formation of the spinal cord. Symptoms of lipomyelomeningocele may include a pinkish patch, dimple or skin tag in the lower spine area, muscle weakness of legs, foot deformities, loss of sensation in patches on the lower legs, feet and buttocks, back pain, and bladder and bowel incontinence.

MENINGOCELE develops when bones do not close fully around the spinal cord. The meninges (coverings of the spinal cord) are pushed out through the opening to form a sac containing cerebrospinal fluid (CSF) that is covered by skin. The spinal cord remains in the spinal column and the nerves may not be as severely affected. There may be motor or sensory changes after the sac is surgically repaired.

MYELOMENINGOCELE is the most severe form of spina bifida. It occurs when the bones fail to close around the spinal cord. The meninges and the spinal cord protrude through the opening in the spine to form a sac that is usually transparent, not covered by skin and contains cerebrospinal fluid (CSF). The spinal cord fails to develop properly and spinal nerves are damaged.

Health Challenges Associated with Spina Bifida

People living with spina bifida may experience additional health challenges including:

Hydrocephalus which is the excess accumulation of cerebrospinal fluid (CSF), affects more than 85% of people with spina bifida. can cause serious damage to the brain impacting its ability to function.

Walking to some extent can be accomplished by many children with spina bifida. This is dependent on the location of the cele and how well muscles in the legs work.

Small Spastic Bladder the bladder is small and holds little urine which results in uncontrolled bladder muscle contractions that may lead to back up of urine and enlargement of the kidneys and wetness.

Large Flaccid Bladder which occurs when the bladder becomes unusually large and can lead to frequent infections.

Bowel Challenges which may include frequent “accidents” or fecal incontinence due to weak anal sphincter muscles or decreased sensation due to nerve damage. Severe constipation may also occur because waste material moves more slowly through the bowel causing too much water to be absorbed.

Tethered Cord Syndrome which may cause bladder changes (increased urgency and frequency and urinary wetness, urinary infections), bowel changes (urgency and frequency in bowel soiling, changes in stool consistency), back pain, leg and/or foot changes and, scoliosis.

Syringomyelia or Syrinx which may result in increased scoliosis and changes in sensation such as “pins and needles” and/or weakness of the hands and arms.

Chiari II Malformation which may cause a small percentage of people to experience aspiration (food and liquid entering the lungs), apnea (stop breathing for more than 5 to 10 seconds), hypersensitivity to objects in the mouth, light and loud sounds, gagging, choking, vomiting, stridor, tightness and/or weakness of arms, arching of head backwards, and/or a weak suck when using a bottle in breast-feeding babies. Most individuals with myelomeningocele have Chiari II Malformation.

Who develops spina bifida and why?

The exact cause of spina bifida is not known. Development of the condition is likely the result of a number of factors. These may include genetics of both parents, environmental factors, and other factors not yet identified.

In most babies, the neural tube forms by the 28th day after conception. With spina bifida, a portion of the neural tube does not develop or close properly. Bone, muscle and skin cannot form around the spinal cord where the tube is open.

Prevention of spina bifida

Some women may be more at risk and should consult a physician before becoming pregnant. Those at risk include women who:

have a family history of NTDs or a previous pregnancy affected by an NTD
have a personal or family history of NTDs (or your partner has such a history)
have insulin-dependent diabetes
use certain anti-seizure medications
are clinically obese
abuses alcohol or
are of Celtic, Northern Chinese, Cree or Sikh heritage

Folic acid has been proven to reduce the risk of neural tube defects (NTDs), including spina bifida, by as much as 70%. Women of child-bearing age who are sexually active should take a daily multi‑vitamin which contains at least 0.4 mg of folic acid – even if they are not trying to get pregnant. Taking the appropriate amount of folic acid at least three months prior to conception as well as during the first 3 months of pregnancy is essential for all women.

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Fetal Surgery One of the most recent and exciting developments in the history of treatment for spina bifida is the introduction of in-utero surgery. In some babies diagnosed before 25 weeks gestation, surgery to close the opening in the baby’s back while they are still in the womb may be an option.

Because spinal cord damage can worsen during the baby’s development in the womb, repair of the opening may prevent further damage and offer significantly better results than repair done after birth. It may also reduce the risk of developing hydrocephalus, improve mobility and the chances the individual will be able to walk independently.

This surgery is now available in Canada. If you are given a prenatal diagnosis of spina bifida, talk to your health care provider for more information about your options as soon as possible.

Life with spina bifida

While there is no cure for spina bifida and it does bring lifelong challenges, it is important to remember that most of these challenges can be managed. Attitudes and expectations, assistive devices, community supports and a host of services all contribute to independence and quality of life. Participation at school, work and the community as well as knowing when to ask for assistance are also important. People living with spina bifida can live happy, productive, and fulfilling lives.