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Pediatric Neurology & Neurosurgery Program: Spina Bifida Treatment

Offering Comprehensive Spina Bifida Treatment

The Department of Neurosurgery at Rutgers Health and RWJBarnanbas Health offers comprehensive, compassionate care and treatment of spina bifida. The board-certified physicians at our Pediatric Neurology & Neurosurgery Center treat a wide range of diseases affecting the nervous system in child patients. We take a multidisciplinary team approach, so your child gets optimal care from a wealth of pediatric specialists who work together to treat spina bifida and other pediatric neurological disorders.

What Is Spina Bifida?

Spina bifida means “split spine” in Latin, and it is a birth defect in which the spine, back bones, and surrounding nerves fail to develop properly during fetal development. This neurological condition is known as a neural tube defect. The neural tube begins as a flat plate of cells which then rolls into a tube that closes. When this neural tube fails to close properly, it affects development of the brain, spinal cord, and other protective coverings. Normally, the neural tube closes in the first month of fetal development following conception; babies whose neural tubes fail to close will develop spina bifida. Symptoms range from mild to severe, and babies may have severe nerve damage or paralysis from this birth defect. Although spina bifida is treatable, any nerve damage is permanent. The severity of the condition correlates to the location of the spinal defect, as well as its size and type.

Types of Spina Bifida

The three main types of spina bifida are:

  • Spina bifida occulta: The National Institute of Neurological Disorders and Stroke estimates that as many as 10 to 20% of babies with spina bifida have spina bifida occulta. This is the mildest type, hence the word “occulta,” which means “hidden” in Latin. It is also called closed spina bifida, in contrast with more severe “open” types of spina bifida. Most babies born with closed spina bifida experience no symptoms and parents are usually unaware their baby has the birth defect. The only noticeable sign of spina bifida occulta, if there are any signs, is a visible skin abnormality covering the affected portion of the spine, such as a patch of hair or unusual pigmentation. Rarely, babies born with this type of spina bifida experience disabilities, such as foot deformity, weakness and numbness in the legs or hands, and bladder dysfunction.
  • Meningocele (pronounced muh-NING-go-seel): This open type of spina bifida involves a sac protruding through the skin through an opening of the spinal cord. Babies born with this noticeable lump on the back must have emergency surgery to repair the defect, and in most cases, will experience no nerve damage from the operation. Babies with this type of spina bifida experience no neurological symptoms, because their spinal cord developed normally in fetal development. Most babies born with this type of spina bifida have normal intelligence and are able to walk, often with assistive devices.
  • Myelomeningocele (pronounced my-uh-lo-muh-NING-go-seel): This is the most severe type of spina bifida and usually causes lifelong neurological defects and disability. It is very rare, occurring once in every 800 births, according to the National Institutes of Health. Babies with myelomeningocele have a portion of the spinal cord and nerves exposed through the skin. Many babies experience nerve damage, permanent loss of bladder/bowel control, and partial or completely paralyzed legs. In addition, 70 to 90% of infants with myelomeningocele also have hydrocephalus (“open skull”), which causes fluid inside the head to build up, causing increased pressure which makes the skull bones expand to an abnormally large size. This can cause an intellectual disability or learning problems, which may be apparent if the baby has a short attention span, difficulty expressing or understanding language, and difficulty comprehending math. Without prompt treatment, hydrocephalus can also cause brain damage, blindness or repeated seizures. Babies born with this type of spina bifida require emergency surgery within 24 hours to minimize the high risk of infection or bacterial meningitis, and to preserve the existing function of the spinal cord. Babies born with this type of spina bifida usually require around-the-clock care and cannot go home with their parents until they have been cleared by their neonatal intensive care unit (NICU) physicians.

What Causes Spina Bifida?

There is no known cause of spina bifida. What causes the disruption of the complete closure of the neural tube could be a variety of factors, including genetics, maternal nutrition, environmental factors, and more.

Spina Bifida Prevention

Because spina bifida occurs during the first month of fetal development, it can be very difficult to successfully prevent it, as many women are unaware of their pregnancy at this stage. The American College of Medical Genetics and the Centers for Disease Control and Prevention (CDC) recommend that women of childbearing age, especially those actively trying to conceive, should take a multivitamin containing folic acid, which may prevent spina bifida. A healthy diet containing foods high in folic acid is also recommended.

Risk factors for spina bifida also include maternal age – teenage mothers are more likely to have a baby born with spina bifida. Additionally, mothers with a history of miscarriage are at risk.

In recent years, pioneering neurosurgeons have used an experimental technique to correct spina bifida in utero with prenatal surgery in fetuses before the 26th week of gestation. This type of fetal surgery can successfully close the defect and prevent further loss of nerve function with better results than performing on a baby after birth. Prenatal surgery is not feasible in every patient, and this type of specialized surgery should only be performed by experienced fetal surgery experts using a multispecialty approach that involves neonatal intensive care.

Spina Bifida Diagnosis

Prenatal Diagnosis
Usually, spina bifida is diagnosed during pregnancy in the second trimester, from a blood test that can reveal other birth defects, such as Down syndrome or congenital diseases. Positive screening indicates the need for further testing, either through an ultrasound or amniocentesis, to confirm a diagnosis of spina bifida. An ultrasound (also called a sonogram) is a diagnostic imaging tool showing images of the fetus’ blood vessels, tissues, and organs on a computer screen. Amniocentesis is a more invasive procedure which involves inserting a long, fine needle through the mother’s abdomen into the uterus, in the amniotic sac, to withdraw fluid for testing. This maternal blood test measures alpha-fetoprotein levels to determine whether the baby is at an increased risk of spina bifida.

Some women may opt to terminate their pregnancy when the diagnosis of spina bifida is confirmed.

Postnatal Diagnosis
Milder cases of spina bifida typically cannot be accurately diagnosed in utero. Symptoms may still not be apparent after birth if the baby has closed spina bifida. For the more severe types of spina bifida, deformities are usually obvious. Most infants will have a sac protruding from their backs that requires immediate surgery to correct and preserve remaining spinal cord function.

Treatment Options for Spina Bifida

There is no cure for spina bifida, because nerve damage is irreversible and nerve tissues cannot be repaired or replaced. That means spina bifida is a lifelong, chronic condition, and care focuses on managing the condition rather than curing it. As such, patients require ongoing treatment to manage their associated disabilities from a specialized team of experts in the fields of neurology, neurosurgery, and others. Children with spina bifida can lead active lives and live well into adulthood, but the prognosis of the condition depends on its severity.

Effective treatments for spina bifida include:

  • Surgery: The purpose of spina bifida surgery is to repair and close open lesions along the infant’s spinal cord. If present, hydrocephalus is also repaired by draining excess fluid from the head with a shunt insertion.
  • Ongoing physiotherapy: Difficulty with movement and walking is often present in those diagnosed with spina bifida, and physical therapy is often beneficial to maintain strength and a degree of independence.
  • Walking and mobility assistive devices: Many infants born with spina bifida experience weakness in the limbs and need help with movement from a walker, leg braces, or a wheelchair.
  • Special equipment: Children often require help with performing basic functions such as bathing and toileting. Bath chairs, commode chairs and standing frames may be helpful for some basic tasks.

Request an appointment online now or call 833-656-3876.