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Some Frequently Asked Questions
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Spina Bifida is one of a group of birth defects called neural tube defects (NTDs). Often called open spine, it affects the backbone and sometimes the spinal cord. The neural tube is the embryonic structure that develops into the brain and spine. Spina Bifida.
How does Spina Bifida affects a child?
- Every unborn baby's spine is open when it first forms, but it normally closes by the 29th day following conception. In Spina Bifidas, the backbone never closes completely. There are three forms:
- Occulta. In this usually symptom less form, there is a small defect or gap in one or more of the small bones (vertebrae) of the spine. The spinal cord and nerves usually are normal, and most affected individuals have no problems.
- Meningocele. In this rarest form, a cyst or lump consisting of membranes surrounding the spinal cord pokes through the open part of the spine. The cyst, which can vary in size, can be removed by surgery, allowing for normal development.
- Myelomeningocele. In this most severe form, the cyst holds nerve roots of the spinal cord and often the cord itself. Or there may be no cyst, but only a fully exposed section of the spinal cord and nerves. Spinal fluid may leak out. Affected babies are at high risk of infection until the back is closed surgically, although antibiotic treatment may offer temporary protection. In spite of surgery, some degree of leg paralysis and bladder and bowel control problems remain.
- Hydrocephalus, or fluid on the brain, occurs in 70 to 90 percent of children with the most severe form of spina bifida. When the cerebrospinal fluid, which cushions and protects the brain and spinal cord, is unable to drain normally, fluid collects in and around the brain, causing the head to become enlarged. Without treatment, mental retardation and other neurologic damage may result. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.
- Spina bifida is usually an isolated birth defect. Although scientists believe that genetic and environmental factors may act together to cause this and other NTDs, 95 percent of babies with spina bifida and other NTDs are born to parents with no family history of these disorders. While spina bifida appears to run in certain families, it doesn't follow any particular law of inheritance. If one child has spina bifida, the risk of recurrence in any subsequent pregnancy is about one in 40. If there are two affected children, the risk in any subsequent pregnancy is about one in 20. Spina bifida also can occur as part of a syndrome with other birth defects. Here, inheritance patterns may differ from those of isolated spina bifida.
Can Spina Bifida be prevented?
- Studies show that the risk of spina bifida and other NTDs may be influenced by the mother's diet, especially the amount of the B vitamin folic acid she consumes.
- Folic acid, a common water-soluble B vitamin, is essential for the functioning of the human body. During periods of rapid growth, such as pregnancy and fetal development, the body's requirement for this vitamin increases. Folic acid can be found in multivitamins, fortified breakfast cereals, dark green leafy vegetables such as broccoli and spinach, egg yolks, and some fruits and fruit juices. However, the average American diet does not supply the recommended level of folic acid.
- Spina bifida occulta usually requires no treatment. Meningocele, which does not involve the spinal cord, can be repaired surgically, usually with no paralysis. Most children with meningocele develop normally. However, affected children should be evaluated for hydrocephalus and bladder problems so they can be treated promptly, if necessary.
- A baby with the most severe form of spina bifida usually is operated on within 24 to 48 hours after birth. Doctors surgically release the spinal cord, replace it in the spinal canal and cover it with muscle and skin. Prompt surgery helps prevent additional nerve damage from infection or trauma. However, nerve damage that has already occurred cannot be reversed and limb paralysis and bladder and bowel problems usually remain.
- As soon after surgery as possible, a physical therapist teaches the parents how to exercise their baby's legs and feet to prepare for walking with leg braces and crutches. Studies show that about 70 percent of affected children are able to walk with or without these devices. The rest need a wheelchair. (The severity of paralysis is largely deter-mined by the specific spinal nerves involved. In general, the higher the cyst on the back, the more severe the paralysis. About 80 percent of spina bifida cysts are located in the lower back’s lumbar and sacral regions. Most of these children can walk with aids. Children with cysts above this level are more likely to need a wheelchair.)
- If the child develops hydrocephalus, fluid can be drained from the brain through surgical placement of a special tube called a shunt. The shunt runs under the skin into the chest or abdomen, and the fluid passes harmlessly through the child's body.
- Most children with severe Spina Bifida have a tethered spinal cord, meaning that the spinal cord does not slide up and down with movement as it normally should, because it is held in place by surrounding tissue. While most children develop no symptoms from a tethered cord, some suffer a progressive loss of function in their legs, and a few develop scoliosis (curvature of the spine). If the spinal cord is surgically untethered soon after these symptoms begin, a child should return to his or her usual level of functioning.
- According to the Spina Bifida Association of America (SBAA), between 18 and 73 percent of children with Spina Bifida are allergic to latex (natural rubber), possibly due to intense exposure during multiple surgeries and medical procedures. Symptoms may include watery eyes, wheezing, hives, rash, and even life-threatening anaphylactic reactions. Doctors should use only non latex gloves and equipment during medical and surgical procedures on individuals with Spina Bifida. Affected individuals and their families should avoid latex items in the home and community.
- With treatment, children with Spina Bifida usually can become active individuals. Most affected women can have children, although such pregnancies are considered "high risk."
Can Spina Bifida be detected prenataly?
- Spina Bifida often can be detected before birth using two or more tests. Most health care providers now routinely offer pregnant women a blood test called the alpha-fetoprotein (AFP) screening test. This test detects pregnancies at higher than average risk of Spina Bifida and other NTDs.
- If a woman has a high AFP test result not caused by factors such as a miscalculation of fetal age, her health care provider probably will recommend two additional tests that are accurate in detecting severe Spina Bifida. These are a detailed ultrasound examination of the fetal spine, and amniocentesis, in which a needle is used to withdraw a small amount of amniotic fluid to measure levels of AFP in it.
What are the benefits of detecting Spina Bifida before birth?
- When Spina Bifida is diagnosed before birth, health care professionals can provide parents with information and support. They can plan for delivery in a specially equipped medical center so that the baby can have any necessary surgery or treatment soon after birth.
- Cesarean delivery prior to the onset of labor can reduce the severity of paralysis in babies with Spina Bifida. If a baby is prenataly diagnosed with Spina Bifida, parents can discuss with their doctors the possibility of a planned cesarean delivery.