Tragically, each year 200 to 400 babies, or approximately 2 to 4 babies each day, are born with spina bifida in Canada. This is approximately 1 in every 400 life births.
What Is Spina Bifida?
Spina bifida occurs when the tiny ribbon of tissue that by the 28th day of pregnancy normally folds inward to form a tube connecting the brain and spinal cord in a developing infant fails to close completely. When this happens, the baby’s backbone, spine, and brain can be affected.
There are three forms of spina bifida:
In this form of spina bifida which is usually symptomless, there is a small defect or gap in one or more of the vertebrae of the spine. The spinal cord and nerves are usually normal, and most affected children have no disabilities.
This is the rarest form of spina bifida, consisting of a cyst or lump of membranes surrounding the spinal cord pokes through the open part of the spine. The cyst, which can vary in size, can generally be removed by surgery, allowing for normal development of the child.
This is the most severe form of spina bifida, can result when the cyst holds the membranes surrounding the spinal canal, nerve roots of the spinal cord, and, often, even the cord itself. Sometimes, however, there is no cyst, and instead there is only a fully exposed section of the spinal cord and nerves. Spinal fluid may leak out in such cases. Babies affected by this form of spina bifida are at high risk of infection until the back is closed surgically. Antibiotic treatment may offer temporary protection. Even with surgery, however, there is often some leg paralysis, as well as bladder and bowel control problems. Many children also have hydrocephalus (the excessive accumulation of cerebrospinal fluid in the brain).
Can Spina Bifida Be Prevented?
Up to 60 percent of all cases of spina bifida could be prevented if the mother had sufficient amounts of folic acid everyday before and during early pregnancy, before the neural structures close in the developing baby. In particular, women who already have had a baby with spina bifida or another neural tube disorder (NTD), as well as women who have spina bifida, diabetes or seizure disorders, should consult their health care providers before another pregnancy about the amount of folic acid to take.
Can Spina Bifida Be Detected Prenatally?
Spina bifida often can be detected before birth using two or more tests. First, most health care providers now routinely offer pregnant women a blood test called the maternal serum alpha-fetoprotein (MSAFP) screening test (part of the “triple screen”). This test detects pregnancies at higher-than-average risk of spina bifida and other NTDs, as well as some other birth defects, such as Down syndrome. If a woman has a high MSAFP test result (not caused by factors such as a miscalculation of fetal age), her health care provider probably should also recommend two additional tests that are accurate in detecting severe spina bifida. These are a detailed ultrasound examination of the fetal spine, and amniocentesis to measure levels of alpha fetoprotein (AFP) in amniotic fluid. When spina bifida is diagnosed before birth, health care professionals can provide parents with information and support. They can plan for delivery in a medical center that is properly equipped so that the baby can have any necessary surgery or treatment soon after birth. They can discuss with parents the potential benefits of a cesarean delivery prior to the onset of labor so as to reduce the likely severity of paralysis in the babies. They can discuss with parents the possibility of prenatal surgery to try to repair severe spina bifida before birth. Such surgery may help prevent future paralysis and may reduce the need for shunts to drain fluids from the brain. Lastly, they can provide the parents with the option of an abortion in cases of severe spina bifida.
How Can Spina Bifida Be Treated?
Treatment, if any is required, is determined by the type and severity of the spina bifida. Babies with meningocele, which does not involve the spinal cord, will generally undergo surgery, usually with no paralysis. Most children with meningocele are able to develop normally. However, affected children should be evaluated for hydrocephalus and for bladder problems so they can be treated promptly if these problems exist.
Babies with myelomeningocele, the most severe form of spina bifida, usually require surgery within 24 to 48 hours after birth. Physicians surgically reposition exposed nerves and spinal cord back inside the spinal canal and cover them with muscle and skin. Prompt surgery helps prevent additional nerve damage from infection or trauma. Unfortunately, any nerve damage that has already occurred prior to the surgery cannot be reversed and limb paralysis, as well as bladder and bowel problems usually remain.
As soon as possible following the surgery, a physical therapist begins working with the parents to teach them how to exercise their baby’s legs and feet to prepare the baby for walking with leg braces and crutches. Approximately 70 percent of affected children will be able to walk, although some will require these devices. Yet, approximately, 30 percent of children will require the use of a wheelchair.
About 90 percent of those children affected with the most severe form of spina bifida develop hydrocephalus, or fluid on the brain. Without immediate treatment, mental retardation and other neurologic damage may result. If this condition does develop, fluid can be drained from the brain through the surgical implantation of a special tube called a shunt, that runs under the skin into the chest or abdomen, and allows the fluid passes harmlessly into the child’s body.
Most children with severe spina bifida will also have a tethered spinal cord, a condition in which the spinal cord does not slide up and down with movement as it should, because it is held in place by surrounding tissue. While most children have no symptoms from this, some suffer from the progressive loss of function in their legs, and a few will develop scoliosis (curvature of the spine). If the spinal cord is surgically untethered shortly after these symptoms begin, the child may be able to return to his or her usual level of functioning.
Other chronic complications associated with severe spina bifida include obesity, gut and urinary tract disorders, psychological and sexual issues, and learning disabilities.
What Can We Do If Our Child Was Born With Spina Bifida?
If your child was born with a severe form of spina bifida and the mother was not screened appropriately during the pregnancy, or the parents were not advised of treatment options, or of the possibility of an abortion, you should immediately contact a competent lawyer. The lawyer will be able to work with you to determine what options you may have regarding your health care provider’s negligence, so as to protect your child’s future.