The Myelomeningocele Clinic offers care for children with spina bifida. The team consists of pediatric specialists in neurology, urology, orthopedics, orthotics, gastroenterology and physical and occupational therapy. A dedicated nurse ensures that patients’ tests and visits are coordinated to minimize unnecessary visits.
Spina bifida is one of the most commonly occurring congenital disorders (birth defects) in the United States, affecting more infants each year than muscular dystrophy and cystic fibrosis combined. The disorder is caused by the incomplete development of the fetus’ spine during the first month of pregnancy. Spina bifida varies in degree from mild with no symptoms, to severe with nerve damage and paralysis. Infants born with a more serious degree of this disorder have open lesions on their spine where significant damage to nerves and the spinal cord has occurred. The opening can be repaired through surgery, but the nerve damage is irreversible. Spina bifida can occur anywhere along the backbone, but is most often found in the small of the back or further down. There are three types of spina bifida: spina bifida occulta, meningocele, and myelomeningocele.
Spina bifida occulta
Spina bifida occulta is the mildest and most common form of this disorder. It usually only involves a minor fault with one or two of the vertebrae and it usually shows no symptoms and does not require treatment. When an infant is born with spina bifida occulta, the skin is normal and covers the deformity of the spinal bone. Spina bifida occulta literally means "a hidden spot on the spine," and for most people, this spot will remain hidden. It has been estimated that approximately 10 percent of the American population has spina bifida occulta and that most are not even aware they have it. Rarely, spina bifida occulta will cause problems when a child grows to adolescence. By this time in the child’s life, the spinal cord has become fastened to the backbone, so when the growth spurt of adolescence begins, the nerves of the spinal cord become stretched. The result can be difficulties such as weakness and numbness in the legs, bladder infections, and incontinence (lack of bladder and bowel control). The more the spinal cord is stretched, the worse the symptoms become. Surgery to relieve these symptoms by reducing the tension on the spinal cord is simple and often successful.
In this least common type of spina bifida, the meninges (membrane surrounding the spinal cord) protrude through the opening causing a lump or sac on the back. More severe than spina bifida occulta, meningocele can nevertheless be repaired through surgery with little or no nerve damage resulting. The surgery is performed at any time during infancy. With meningoceles, the spinal cord has developed normally and is undamaged. The child, therefore, has no neurological problems.
Myelomeningocele is the most severe form of spina bifida, occurring nearly once for every 1,000 live births. For infants born with a myelomeningocele, the spinal cord does not form properly and a portion of the undeveloped cord protrudes through the back. A sac containing cerebrospinal fluid and blood vessels surrounds the protruding cord, which is usually not covered by skin so that the nerves and tissues are exposed. Between 70 and 90 percent of infants born with myelomeningocele also experience hydrocephalus. Hydrocephalus is an excess build up of spinal fluid on the brain that will cause brain damage, seizures, or blindness if it is left untreated. To avoid this, plastic shunts must be surgically inserted beneath the skin to drain off excess fluid into the abdominal cavity.
Infants born with myelomeningocele often have paralysis or weakness below the level of the spinal lesion. This affects the lower limbs along with problems with bladder and bowel function. In extreme cases, the trunk and upper extremities are involved.
Prevention: Because it involves nerve damage, more serious types of spina bifida cannot be cured. But many experts do believe it can be avoided. Folic acid, a water-soluble B vitamin often found in leafy green vegetables, plays an important role in the prevention of spina bifida. Some studies suggest that if all women of childbearing age took a proper dosage of folic acid (0.4 mg/day), the incidence of spina bifida could be reduced by up to 75 percent. While spina bifida does run in families, 95 percent of spina bifida cases have no prior family history of the disorder.
Children with more severe cases of spina bifida need to learn mobility skills and need training to learn to manage their bowel and bladder functions. Some may require catheterization to permit the passage of urine. These children also require multiple surgeries as they grow up and will need assistive devices such as braces, crutches and wheelchairs throughout their lives.
Surgery, physiotherapy, and medication are used to treat some of the effects of spina bifida and may be needed throughout a patient’s life to prevent and manage certain complications. Children with spina bifida, especially those who experienced hydrocephalus, sometimes have learning problems. These learning disorders generally involve difficulty paying attention, expressing or understanding language, organizing, sequencing, and comprehending math and reading.
Like many other conditions, education about spina bifida and local support groups can be the greatest tools for managing the disorder and preventing further complications.
- Learn more about spina bifida and treatment options available at Cleveland Clinic
Specialty Care Providers Who Treat This Condition:
(FYI - In myelo clinic, patients are seen by a team including GI, Urology, Orthopedics, PT and OT)
The following organizations can provide additional information about spina bifida: