What is spina bifida? Spina bifida is when a baby’s spine does not form normally during pregnancy, resulting in gaps between bones when the baby is born. This often results in damage to the spinal cord and nerves. Spina bifida affects between 1,500 to 2,000 of the more than 4 million babies born in the United States each year. An estimated 166,000 people with spina bifida live in the United States.
Spina bifida can cause both physical and intellectual disabilities. The symptoms can range from mild to severe.
Are there different types of spina bifida?
Yes. The three main types of spina bifida are occulta, meningocele and myelomeningocele. Let’s explore what each of those mean.
- Occulta: Occulta, which means “hidden,’’ is the mildest form of spina bifida. This condition causes a layer of skin to cover the opening in the baby’s vertebrae. This form of spina bifida rarely causes disabilities or symptoms.
- Meningocele: This type of spina bifida causes a sac of fluid to come through an opening in the baby’s back. The spinal cord is not in this sac, and there is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.
- Myelomeningocele: This is the most serious type of spina bifida. This condition causes a sac of fluid to come through an opening in the baby’s back, but in this type of spina bifida, part of the spinal cord and nerves are in this sac and are damaged. This condition causes moderate to severe disabilities, including problems with going to the bathroom, a loss of feeling in the person’s legs or feet, and not being able to move the legs.
What causes spina bifida?
Doctors and researchers are still trying to understand what might cause spina bifida. Two possible causes include:
Pregnant women can take several steps to reduce the risk of their baby having spina bifida, which include:
- Take 400 micrograms of folic acid every day. Folic acid, also called folate, is an important vitamin in the development of a healthy fetus. If you previously had a pregnancy affected by spina bifida, your doctor may recommend taking a higher dose of folic acid before becoming pregnant again and early in your pregnancy; discuss this with your OB/GYN. All women of childbearing age are encouraged to eat foods high in folic acid, including dark green vegetables, egg yolks and some fruits. Many foods, such as some breakfast cereals, enriched breads, flours, pastas, rice and other grain products, are now fortified with folic acid.
- Make sure to discuss with your doctor all medications and supplements you are taking, including over-the-counter medicines and vitamins.
- If you have diabetes or are obese, work with your doctor before becoming pregnant to control these conditions.
- Avoid overheating your body, such as using hot tubs or saunas.
- Treat any fevers you have right away with acetaminophen; be sure to let your doctor know if you have a fever.
How is spina bifida diagnosed?
The most common tests to diagnose spina bifida during pregnancy are performed in the second trimester. Doctors use a test called maternal serum alpha fetoprotein screening. Most doctors routinely offer this test to their patients. The fetoprotein screening measures the level of a protein called alpha-fetoprotein, which is made naturally by the fetus and placenta. During pregnancy, it’s normal for a small amount of this protein to cross the placenta and enter the mother’s bloodstream. But if high levels appear in the mother’s bloodstream, it might show that the fetus has an “open” (not skin-covered) neural tube defect. The neural tube forms the early brain and spine.
If a high level of the protein is found in the mother’s bloodstream, a doctor may request more tests, such as an ultrasound or amniocentesis, to determine the cause.
Spina bifida can also be diagnosed after birth. Mild cases of spina bifida that are not diagnosed during prenatal testing may be detected after the baby is born by an X-ray. Babies with the more severe forms of spina bifida often have muscle weakness in their feet, hips and legs that result in deformities that may be present at birth.
Doctors may use magnetic resonance imaging (MRI) or a computed tomography (CT) scan to get a better view of the spinal cord and vertebrae.
How is spina bifida treated?
Unfortunately, there is no cure for spina bifida. Treatment depends on the type and severity of the condition. Most of the time, children with the mildest form need no treatment, although some may require surgery as they grow.
However, research has shown that children who underwent fetal surgery to repair the myelomeningocele form of spina bifida, the most serious type, are more likely to have improved motor outcomes and a decreased likelihood of requiring treatment for hydrocephalus (buildup of fluid in the cavities deep within the brain) compared to those who had traditional corrective surgery after birth. This is a major surgery, both for the mother and the fetus.
A baby born with spina bifida needs to have the exposed part of their spinal cord repaired to prevent further injury and infection. A neurosurgeon places the neural tissues back in the spinal canal and then closes the muscle and the skin. A plastic surgeon may be needed if there is a large area that is difficult to close. This procedure used to be considered a medical emergency, done a few hours after birth. Surgery is now most often completed within the first 48 hours of the baby’s life.
If a child has no movement in their legs from the hips down, he or she will need a wheelchair. If a child is born with movement of the thigh muscles and feeling down to below the knees, there is a chance he or she will be able to walk with some sort of braces.
While there is no cure, fortunately, with a multi-disciplinary comprehensive approach to the healthcare of patients with spina bifida, many children with spina bifida can lead happy, active and productive lives. Follow-up studies of children with spina bifida show that they enter college in the same proportion as children without spina bifida, and many are actively employed. With advancements in medical care, the outlook for people with spina bifida will continue to improve.
The multi-specialty spina bifida clinic at the Michael R. Boh Center for Child Development at Ochsner Hospital for Children offers personalized care of these patients in one convenient location to ensure optimal healthcare for these children and promote healthy growth and development.
Learn more about neurosurgeon Esther Dupepe, MD.