Treatment of Spina Bifida
There is no cure for Spina Bifida. The damaged nerve tissue cannot be repaired or replaced. Nerves do regrow, however the growth is very slow. The aim of treatment is to enable the child to reach the highest degree of function and independence. The type of treatment required depends on the type and severity of the spinal defect. Generally, children born with the mildest form of Spina Bifida (Occulta) need no immediate treatment, although may require monitoring for signs of spinal cord tethering. Infants born with Meningocele usually need surgical repair of the defect, but go on to live with little to no impairment.
However, the situation is quite different for babies born with Myelomeningocele. They require treatment that begins immediately after birth, and in some cases even before birth. Medical and surgical management will be important throughout the individual’s life. Their well-being may depend on how fast and how well the treatment is delivered. For that reason, a woman who knows that her baby will be born with Spina Bifida should seek evaluation at a center with expertise in the management of Spina Bifida early in pregnancy and may decide to deliver her child in a large medical center where specialized surgery on her newborn can be performed. Her doctor also may recommend that she have a cesarean section rather than deliver vaginally. Because C-sections can be scheduled in advance, this type of birth allows the pediatric neurosurgical team to be on site at the appointed time, allowing them to perform surgery shortly after the baby is born.
The two most important goals in treating Myelomeningocele are:
- to prevent infection to the exposed nerves and tissue of the spinal defect
- to protect the exposed nerves and tissue from additional damage
Typically, a child born with Myelomeningocele will have surgery within 24 to 48 hours after birth to close the defect and prevent infection or further damage. Doctors generally begin treatment with antibiotics as soon as possible in order to avoid infection of the exposed spinal cord. This could lead to encephalitis or meningitis, both very serious, even fatal, infections. During the procedure, a neurosurgeon puts the exposed spinal cord and tissue inside the spinal canal in the baby’s body and then covers the opening with muscle and skin taken from either side of the back. If the area in question is very large and hard to close, a plastic surgeon may be called in to accomplish this part of the procedure.
Earlier Intervention (Prenatal Surgery)
Recently, doctors have begun performing fetal surgery to treat Myelomeningocele. Fetal surgery, which takes place before birth, is performed in utero. This kind of surgery involves opening the mother’s abdomen and uterus to perform the spinal closure surgery on the baby. Some doctors believe the earlier the defect is corrected, the better it will be for the baby. Apparently, the more time that the spinal cord is exposed to substances outside the fetus’s body, even those within the uterus, the greater the chance for damage to the cord and nerves. The hope is that by repairing the defect between the 19th and 25th weeks of pregnancy, damage to exposed spinal nerves may be lessened and the likelihood of paralysis and other problems may be avoided. Although the procedure cannot bring back lost nerve function, it may prevent additional losses from occurring. However, the surgery is still considered experimental and there are risks for the unborn child as well as for the mother.
Another benefit that doctors have discovered is that the procedure positively affects the way the brain develops in the uterus. Certain complications, such as the Chiari II malformation with associated hydrocephalus, actually correct themselves when prenatal surgery is performed. This can reduce, and sometimes eliminate the need for surgery after birth to implant a shunt to drain excess brain fluid.
One problem is that prenatal surgery greatly increases the risk of premature birth, which poses its own assortment of risks for the baby. If the surgery causes the baby to be born too early, there can be numerous complications: organs that are not mature, bleeding in the brain and even death. Risks for the mother include infection, blood loss, gestational diabetes and weight gain due to prolonged bed rest.
Ongoing Care & Treatment
The spinal closure surgery may only be the first of many operations that a child with Spina Bifida may need. Following the first surgery, the baby should have regular evaluations to assess any complications or developmental issues that may call for further procedures. For example, a baby who also has hydrocephalus will need an operation to place a shunt in the brain. The shunt is a thin tube that helps to relieve pressure on the brain by draining and diverting extra fluid. In addition, some children may need subsequent orthopedic surgeries to manage problems with their feet, hips, or spine. Careful monitoring of bladder and kidney function is essential to avoid damage to the kidneys and in severe cases, renal failure and death.
Every child with Myelomeningocele will need extensive and intricate care. This requires the involvement of a specially trained team of professionals. This care team should include pediatricians, neurosurgeons, orthopedic surgeons, endocrinologists, urologists, physical therapists, orthotics specialists, occupational therapists and other medical specialists. Ideally, the child with Spina Bifida should receive care at a specialized multidisciplinary Spina Bifida setting where all the necessary specialists can deliver care in a coordinated fashion. These clinics exist all over the U.S. and a list can be obtained from the Spina Bifida Association. These specialists will collaborate with your primary care clinician.
Children with Spina Bifida should be involved in the medical decision making and self-care process throughout childhood and transition to adulthood.