Spina Bifida Treatment

Comprehensive Care from Infancy Through Adulthood

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Spina bifida is a complex condition that requires lifelong, coordinated care from multiple medical and surgical specialties. At Duke, we understand that problems and solutions related to spina bifida vary from person to person, so we customize care based on your or your child’s needs and lifestyle. We also provide care that’s convenient and family-focused, to maximize your quality of life. Because our specialists are trained to care for both children and adults, we take a long-term approach, providing care from before birth through childhood and into adulthood.

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About Spina Bifida

Spina bifida is a neural tube birth defect in which the spine doesn’t develop properly. The spinal cord -- the bundle of nerves that sends messages between the brain and body -- and its covering may push out through openings in the backbone (spine) and even the skin. The defect can occur anywhere along the spine.

There are several different forms of spina bifida, including:

  • Spina Bifida Occulta -- a mild form of spina bifida in which the spinal cord and the surrounding structures remain inside the baby, but the bones in the lower spine fail to form normally. In many cases of spina bifida occulta, the nerves in the spinal cord are not affected, so there are no resulting problems.
  • Meningocele -- a moderate form of spina bifida in which a fluid-filled sac is visible outside of the back area. The sac does not contain the spinal cord or nerves but it is filled with the fluid that bathes the spinal cord.
  • Lipomeningocele -- a moderate form of spina bifida in which a fatty mass bulges over the spine and is attached (tethered) to the spinal cord and pulls on it.
  • Fatty filum or tethered cord -- a mild or moderate form of spina bifida in which the skin over the spine may look normal or have a dimple or hair tuft. The spinal cord can be tethered to the skin or may be pulled down too far, which can affect nerve function.
  • Myelomeningocele -- also known as spina bifida aperta. This is the most common and severe form of spina bifida in which the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back.
Lenox Baker Children's Hospital

Our spina bifida specialists can evaluate and manage your child's condition in one convenient clinic.

Diagnosis and Surgical Treatment

Spina bifida may be diagnosed before or at birth. In more subtle cases, it may not be diagnosed until later in childhood. 

If surgery is required, the spinal cord defect can be repaired by a pediatric neurosurgeon. Some children need surgery right after birth. Even after proper surgery, nerve damage caused by the defect will remain.

Personalized Care for Spina Bifida Symptoms and Conditions

Spina bifida primarily affects the neuromuscular (nerves and muscles) and neuroskeletal (nerves and bones) systems but may affect other body systems as well. The degree of effects on other systems will depend on how much the nerves to those systems -- like the legs, bladder, and bowels -- are affected. People with spina bifida usually require lifelong medical care, as symptoms and conditions can change as the child grows. At Duke, we provide individualized care that focuses on preventing or minimizing the effects of spina bifida, which can include:

Weakness or Paralysis

This typically affects the legs.

Tethered Cord

In this condition, the spinal cord is improperly attached to the spine or its surrounding tissues and is unable to move freely. It can lead to pain, numbness in the legs and feet, difficulty standing or walking, and loss of bowel or bladder control. A tethered cord may not cause any symptoms, or symptoms can develop later in life. Surgery may be required to release the tethered spinal cord or to repair orthopaedic defects.

Chiari Malformation

This is a condition in which the cerebellum -- the part of the brain involved with balance -- extends down through an opening in the base of the skull and into the spinal canal.


Also knowns as "water on the brain," a buildup of cerebrospinal fluid (CSF) in the brain causes pressure inside the head to increase and the skull bones to expand to a larger-than-normal size. It can be caused by a Chiari malformation.

Bladder and Kidney Problems

  • Neurogenic bladder, which can show up as the inability to gain (or later, loss of) bladder control, constipation, frequent urinary tract infections (UTIs), and high bladder pressures that can harm the kidneys
  • Kidney damage or failure

Bowel Problems

Neurogenic bowel can show up as an inability to gain (or later, loss of) bowel control and/or constipation.

Orthopaedic Conditions

  • Scoliosis
  • Kyphosis
  • Hip dislocation
  • Joint deformities
  • Clubfeet
  • Contracted muscles
  • Weaker-than-normal bones and muscles
  • Inability to walk

Other Impacts of Spina Bifida

  • Skin breakdown or ulcers
  • School difficulties
  • Altered sexual function
  • Reduced fertility (typically in males only)
Best Children's Hospital in NC

Duke Children's Hospital & Health Center is proud to be nationally ranked in 10 pediatric specialties.

Why Choose Duke

Convenient, Coordinated Care
Before your visit, our coordinator will work with you to determine which team members you or your child need to see. This may include a neurosurgeon, orthopaedic surgeon, urologist, neurodevelopmental neurologist, physical medicine and rehabilitation specialist, bowel management specialist, nutritionist, physical or occupational therapist, orthotist, wheelchair specialist, or social worker.

Testing and Clinic Visits on the Same Day
Your visit may also include imaging such as MRI, X-rays, and/or ultrasound or blood tests. This can allow you or your child to have all necessary tests and doctor appointments in one visit.

Experts from a Wide Range of Specialties
When you seek spina bifida treatment with us, you benefit from the full range of Duke Health resources. In addition to the providers in our spina bifida clinic, you may be referred to specialists in plastic surgery, radiology, ophthalmology, gastroenterology, gynecology and obstetrics, otolaryngology, pediatric anesthesia, or others areas.

A Team Approach
All of your providers meet together to review and discuss your or your child’s health history, exam findings, and test results. Together, they determine which treatment options offer the best-possible outcomes for each patient. For example, a neurosurgeon and orthopaedic surgeon may collaborate during a combined surgery to avoid multiple procedures, or a neurosurgeon and neurologist may work together to manage headaches.

Ongoing Monitoring
As part of your or your child’s regular visits to our clinic, we’ll monitor any symptoms or changes in function and/or activity. Imaging and lab tests are often ordered routinely to monitor the brain, spine, kidneys, and bladder, and additional studies may be recommended if specific problems are suspected.

Nationally Recognized Surgical Care
Duke is certified as a Level I Verified Children’s Surgery Center by the American College of Surgeons. This designation recognizes our commitment to providing the highest-quality surgical care to young patients. 

Support Services
A social worker is an integral part of our program, providing support and guidance to help manage the impact of spina bifida on your whole family. Our social worker can contact your child’s school, if needed, to address concerns about participation, neurodevelopmental disabilities, or academic performance. We may also recommend special recreational activities and camps to allow you or your child to enjoy life to the fullest.

Leaders in Advancing Spina Bifida Care
Duke is a designated Clinic Care Partner of the Spina Bifida Association, which recognizes hospitals and clinics that use best practices to care for people with spina bifida and associated diseases, such as neurogenic bladder.

Duke is one of the few U.S. centers selected by the Centers for Disease Control and Prevention (CDC) to participate in the National Spina Bifida Patient Registry. It collects information about medical and surgical care for people living with spina bifida and helps treatment centers share best practices and improve the quality of care. Over 600 spina bifida patients at Duke have agreed to participate in the Registry, joining more than 11,000 individuals across the U.S.

We are one of only nine centers participating in the CDC’s Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) program. In this program, children with myelomeningocele receive advanced urologic care and monitoring from birth to age 10. The goal is to obtain the best-possible bladder and kidney function for the child and to help researchers identify the best standards of care.

Our doctors serve or have served on the Professional Advisory Council, Research Advisory Council, and Board of Directors of the Spina Bifida Association.

This page was medically reviewed on 04/09/2024 by