Spina Bifida Treatment

Comprehensive Care from Infancy Through Adulthood

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Overview

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

Content

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.
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 is a variation in which a fatty mass over the spine is attached (tethered) to the spinal cord and pulls on it.
Myelomeningocele -- 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.

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

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Diagnosis and Surgical Treatment

Treatments Overview

Spina bifida may be diagnosed while a child is still in the womb or at birth. In more subtle cases, it may be diagnosed later in childhood.

The original defect can be repaired by a Duke pediatric neurosurgeon if surgery is required. Some children need surgery right after birth. Even after proper surgery, nerve damage caused by the defect will remain.

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Personalized Care for Spina Bifida Symptoms and Conditions

Treatments Overview

Spina bifida primarily affects the neuromuscular and neuroskeletal systems but may affect other body systems as well. People with spina bifida often require lifelong medical care, as symptoms and conditions can change. At Duke, we provide individualized care that focuses on preventing or minimizing the effects of spina bifida, which can include:

Weakness or Paralysis

Description

This typically affects the legs.

Tethered Cord

Description

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 orthopedic defects.

Chiari Malformation

Description

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.

Hydrocephalus

Description

A buildup of cerebrospinal fluid (CSF) 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, Bowel, and Kidney Problems

Description

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

Orthopedic Conditions

Description

Scoliosis
Kyphosis
Hip dislocation
Joint deformities
Clubfeet
Contracted muscles
Weaker than normal bones and muscles

Other Impacts of Spina Bifida

Description

Skin breakdown or ulcers
School difficulties
Reduced sexual function
Reduced fertility (typically in males)

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Why Choose Duke for Spina Bifida Care

Content

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 seeing 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.

Tests in One Location
Your visit may also include imaging such as MRI, X-rays, and/or ultrasound. 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 review and discuss your or your child’s health history, exam and test results. Together, they determine which treatment options offer the best possible outcomes. For example, a neurosurgeon and orthopedic surgeon may arrange to perform a combined surgery in order 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 tests are often ordered routinely to monitor the brain and kidneys/bladder, and additional studies may be recommended if specific problems are suspected.

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 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.

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 of the Spina Bifida Association.

This page was medically reviewed on 12/06/2021 by

John S. Wiener, MD | Pediatric Urologist