Spina Bifida

Gillette Children’s Specialty Healthcare has the largest spina bifida program in the five-state area. We offer comprehensive spina bifida evaluations, treatments and services for infants, children, teens and adults. Because spina bifida is a complex condition that affects each person differently, we provide a wide range of services to meet our patients’ needs.

Why Choose Gillette?

  • Gillette is a nationally and internationally recognized leader in pediatric orthopedics and a regional leader in neurosurgery, neurology.
  • We offer an extensive, interdisciplinary team of experts who provide services tailored to each patient’s and family’s needs.
  • Our facilities and technology are designed specifically for people who have spina bifida and other complex conditions and disabilities.
  • We believe that people who have spina bifida deserve a lifetime of excellent health care—from birth through adulthood.


Spina bifida, a neural tube defect, occurs when an embryo’s spinal cord, surrounding nerves and/or spinal column fail to develop normally during the first month of pregnancy. Spina bifida ranges in severity. In the mildest form, a child may experience no symptoms. In the most severe form, a baby will be born with a portion of the spinal cord outside the body and will have significant lifelong effects.

Types of Spina Bifida

There are three main types of spina bifida, each with varying degrees of severity.


In myelomeningocele—the most severe form of spina bifida—a sac containing an abnormally formed spinal cord protrudes from an opening in the spinal column of a newborn’s back. The nerves at and below the affected area often are damaged, causing weakness or paralysis along with bowel and bladder complications. Babies need surgery shortly after birth to repair the affected area, prevent further injury and avoid infection.

Although nothing can reverse the nerve injury, treatments can help people who have myelomeningocele live as fully and independently as possible.


In meningocele, a sac containing fluid, and possibly nerve roots, protrudes from an opening in the spinal column of a newborn’s back. The condition differs from myelomeningocele in that the sac doesn’t contain the spinal cord, and thus the nerve damage associated with the condition is less severe. Babies need surgery shortly after birth to repair the affected area. Many babies born with meningocele grow up without complications. Some have minor disabilities.

Spina Bifida Occulta

In spina bifida occulta, the bones around a baby’s spinal cord fail to develop normally. The nerves of the spinal cord usually are normal. Sometimes, a dimple, hair patch or red discoloration will appear on the skin over the affected area. That may reveal some soft tissue abnormality (lipoma) in the area. Babies born with spina bifida occulta usually don’t experience complications. Sometimes, however, they experience problems such as tethered spinal cord.

Spina Bifida Incidence, Causes and Prevention

Spina bifida occurs in approximately one of every 1,000 births. Although the cause is unknown, a combination of genetic and environmental factors might be involved. Folic acid is a B vitamin shown to decrease the chances of a woman having a baby who has spina bifida. Because spina bifida occurs before a woman knows she’s pregnant, women of childbearing age should talk to their doctors about taking 400 micrograms of folic acid daily.

Spina Bifida Symptoms and Effects

Depending on the severity and location of the spinal defect, people who have spina bifida can experience a wide range of associated medical complications. Such issues are most common in myelomeningocele and are more severe the higher the abnormality occurs on the spine.

Leg muscle weakness or paralysis is one of the most serious symptoms of myelomeningocele, because it leads to many other complications. People who have myelomeningocele can’t control muscles below the affected area of the spine. In addition, their skin sensation is abnormal.

Orthotics specialist Bill Nolin checks to make sure Jersey's ankle foot orthoses are fitting well and functioning properly. People who have spina bifida often have insensate feet, so we also monitor skin for pressure wounds and skin integrity issues.

In addition to paralysis, muscle weakness and sensation issues, other symptoms and effects associated with spina bifida can include:

  • Attention and learning disorders
  • Bone and muscle problems, including scoliosis
  • Bowel, bladder and kidney complications
  • Epilepsy and seizures
  • Issues related to the brain and spinal cord, such as hydrocephalus, Chiari malformation or tethered spinal cord
  • Latex allergies or sensitivities caused by frequent exposure to the substance
  • Skin issues (such as pressure ulcers or injuries) resulting from decreased sensation
  • Strabismus (sometimes called lazy eye)
  • Walking difficulties caused by weakness or paralysis
  • Weight gain

To address complications associated with spina bifida, patients with more severe forms typically require specialty care throughout their lives.

Spina Bifida Care and Treatments

Spina bifida results in a wide range of impairments that have different effects across the lifespan. Because spina bifida affects many areas of the body, Gillette offers an extensive, interdisciplinary team of experts to provide the best possible care for people who have spina bifida.

Below is an overview of the types of care most often associated with spina bifida.

Surgical Repair

Most infants who have spina bifida require surgical closure within 24 to 48 hours of birth. A neurosurgeon performs this surgery, which involves removing the sac and placing the spinal cord in as typical a position as possible. The procedure protects any functioning nerve tissue around the spinal cord from injury and infection.

Medical and Surgical Care for Related Effects

In addition to repairing the opening in the spine, Gillette neurosurgeons manage hydrocephalus and release tethered spinal cords, as needed, in children or adults. Gillette orthopedic surgeons also address conditions that might accompany spina bifida, such as foot deformities, dislocated hips, fractures, bowed legs or scoliosis.

A patient’s medical care team might also include urologists, neurologists, rehabilitation medicine specialists, sleep specialists, dieticians and many other Gillette providers.

Assistive Technology and Rehabilitation Care

Gillette’s rehabilitation medicine physicians collaborate with therapists to develop treatment plans that promote mobility and independence in people who have spina bifida. Gillette offers a full range of rehabilitation therapy services, including physical, occupational and speech therapy programs designed for people who have spina bifida.

Patients who need equipment such as wheelchairs, seating systems, walkers and orthoses (braces) benefit from the collaboration among Gillette therapists and assistive technology practitioners.

In addition to regular exercise at home and play at adapted playgrounds, Jersey participates in physical therapy at Gillette. For Jersey, regular activity results in better mobility, balance and fitness.

Child and Family Services

Gillette offers a variety of services to help patients and their families coordinate their medical care, address mental health and learning issues, and adjust to life with a complex condition. We offer social workers, child life specialists, psychologists, neuropsychologists, chaplains, therapeutic recreation specialists and more. Our transition services also support teens and families in making the transition to adulthood and adult-focused health care.

Care in Adulthood

For many conditions that continue into adulthood, we offer services through Gillette Lifetime Specialty Healthcare for older teens and adults. Experts at our Gillette Lifetime Specialty Healthcare and our Adult Inpatient Care Unit specialize in spina bifida and its age-related effects.

For more information about the tests and treatments we offer at Gillette, search Conditions and Care.

Tests Associated with Spina Bifida

People who have spina bifida see a wide variety of specialists who might perform tests to help diagnose and treat problems. At Gillette, we also offer prenatal consultations. We'll consult with parents about spina bifida and educate them about current treatment options, provide appropriate counseling and if parents wish, help them plan a course of treatment.

A few of the most common tests associated with spina bifida include:

  • Computerized tomography (CT): A CT scan uses X-rays to produce detailed pictures of structures inside the body. Doctors use CT scans of the head to check the size of the brain’s ventricles. Enlarged ventricles indicate hydrocephalus.
  • Cystometrogram/electromyogram (CMG/EMG): These tests help doctors evaluate the ability of the bladder to store and release urine. Testing involves filling the bladder with normal saline. Machines record the pressure inside the bladder and the activity of the pelvis muscles.
  • Voiding cystourethrogram: This X-ray of the bladder enables doctors to rule out reflux (urine backing up into the kidneys). Before taking the X-ray, the provider uses a catheter to fill the bladder with contrast solution.
  • Magnetic resonance imaging (MRI): This test uses a powerful magnetic field and radio signals to create detailed pictures of structures in the body, such as the brain, spinal cord and joints—including the joints of the spine.
  • Ultrasonography: Ultrasonography uses high-frequency sound waves to outline structures in the body. With ultrasonography, doctors often can diagnose spina bifida and hydrocephalus before a baby is born. Urologists also use ultrasonography to evaluate the kidneys and bladder.
  • X-ray: X-rays of the head, spine and extremities can help providers monitor changes during growth and identify potential problems.
  • Manual muscle testing: Physical and occupational therapists perform manual muscle tests using a graded scale to determine strength and check for muscle weakness. Repeating the tests yearly helps us detect changes.
  • Neuropsychological evaluations: A neuropsychological evaluation can provide valuable information regarding common cognitive difficulties for people who have spina bifida, such as issues with attention, memory, learning, and/or problem-solving. Using information from an evaluation, our neuropsychologists can help patients maximize their abilities.

Learn more about our radiology and imaging services for children, teens and adults.

Our Spina Bifida Services

Because spina bifida results in a wide range of impairments across the life span, we offer a wide range of specialties and services to meet our patients’ needs. To support our commitment to lifelong care, we offer transition-planning services and specialty health care for older teens and adults who have spina bifida.

Specialties and services most often involved in spina bifida care include:

For more information about the services we offer at Gillette, search Conditions and Care.

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