The term spina bifida comes from Latin and literally means ‘split’ or ‘open’ spine. It is the most common neural tube defect in the United States, affecting 1,500 to 2,000 of the more than 4 million babies born in this country each year. The disorder is a birth defect that involves the incomplete development of the spinal cord or its coverings and is characterized by the underdevelopment of the brain, spinal cord and/or the meninges (the protective covering around the brain and spinal cord). Before becoming pregnant, there are several things you should know about the disorder. First, spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo’s spine fail to join together, leaving an open area. Second, in some cases, the spinal cord or other membranes may push through this opening in the back. Third, the condition is usually detected before a baby is born and treated right away.
The exact cause of spina bifida remains a mystery, because no one knows what disrupts the complete closure of the neural tube leading to the malformation. Scientists suspect genetic, nutritional and environmental factors play a role. Research studies also indicate that an insufficient intake of folic acid (a common B vitamin) in the mother’s diet is a key factor. Prenatal vitamins prescribed for the pregnant mother typically contain folic acid as well as other vitamins. If you are pregnant or thinking about becoming pregnant, be certain to take the vitamins your doctor orders. Also, a high fever during pregnancy may increase a woman’s chance of having a baby with spina bifida. Further, women with epilepsy who have taken the drug valproic acid to control seizures could have an increased risk of having a baby with the disease.
You should also be aware that there are four types of spina bifida:
- Occulta – the mildest form and the most common, in which one or more vertebrae are malformed. The name ‘occulta’ means ‘hidden’ and indicates that the malformation or opening in the spine is covered by a thin layer of skin. This form rarely causes disability or symptoms.
- Closed neural tube defects – this form consists of a diverse group of defects in which the spinal cord is marked by a malformation of fat, bone or membranes. Some patients display few or no symptoms, while others have incomplete paralysis with urinary and bowel dysfunction.
- Meningocele – the meninges protrude from the spinal cord opening and may or may not be covered by a layer of skin. Once again, these patients may have few or no symptoms, while others may have symptoms similar to closed neural tube defects.
- Myelomeningocele – the most severe form and occurs when the spinal cord is exposed through the opening in the spine. This form can result in partial or complete paralysis of the parts of the body below the spinal opening. Babies born with this form usually have a condition by the name of hydrocephalus, an accumulation of fluid in and around the brain.
Expectant parents may be able to find out if a baby has spina bifida by taking certain prenatal tests. The alpha-fetoprotein (AFP) test is done between the 16th and 18thweek of pregnancy. This measures how much AFP the fetus produces and shows up in the mother’s bloodstream. If the amount is high, it could be indicative of a neurological problem or possibly multiple births. With both of my sons this test was high and I was petrified! Other tests include an ultrasound and an amniocentesis. Because of my age, I had all of the tests done with both boys. The amniocentesis does carry a slight risk, but it sure sets your mind at ease. This test consists of putting a needle into the mother’s abdomen and then into the uterus to collect fluid to rule out several disorders, including spina bifida.
The treatment of spina bifida varies. Children with the occulta form seldom need treatment. In cases of spina bifida manifesta (closed neural tube defects) treatment depends on the type and its severity. If the baby has meningocele or myelomeningocele, surgery is required to push the spine back and close the hole to prevent infection and protect the spine. A baby who also has hydrocephalus will need an operation to place a shunt in the brain to relieve pressure by draining extra fluid. Parents of children with spina bifida receive support from a complete medical team, including nurses, social workers, surgeons, rehabilitation specialists and pediatricians. Be sure to ask the doctors what you should know in regards to taking care of the baby with spina bifida. The goal is to create a lifestyle for the child and family in which the disability interferes as little as possible with normal everyday activities.