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Spina Bifida

Individualized spina bifida care for children

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Spina Bifida

Spina bifida (split spine) is a rare central nervous system defect that is often diagnosed before birth. The condition results from an improperly developed or closed area of the spinal column that can leave an opening in the child’s back. A portion of the spinal cord and spinal nerves may be exposed through the opening. Spina bifida generally occurs early in pregnancy – within the first 28 days. Every case of spina bifida is different with varying degrees of severity.

While a young fetus is developing in utero, the neural tube serves as the foundation of the brain, spinal cord and tissues that enclose it. The backbone comes into play after about two months to cover this space and protect this vital part of the baby’s anatomy. With spina bifida, the backbone doesn’t fully join together. It’s a relatively rare condition seen in about 1,645 births each year. 

Most children with spina bifida live fulfilling lives that aren’t ruled by their diagnosis. At Shriners Hospitals for Children, we work closely with our patients and their families to ensure a complete understanding of the child’s condition, related health issues and the care plan designed specifically for the child’s unique needs.

What causes spina bifida?

Spina bifida is a condition that occurs during pregnancy while the baby is rapidly developing. It isn’t clear exactly what triggers the neural tube defect that results in spina bifida, although some experts suspect that insufficient folic acid may be an influencing factor. What we do know is that families who are working their way through the diagnosis don’t have to do so alone. At Shriners Hospitals for Children, our compassionate teams of pediatric specialists are dedicated to providing excellent, family-centered care and helping every patient with spina bifida live their life to the fullest.

Types of spina bifida

Though spina bifida is often apparent before or at birth, it doesn’t always present in the same way and medical needs can vary greatly.

Types of spina bifida:

  • Spina bifida occulta: This is considered a mild and most common form of spina bifida. It is often called “hidden spina bifida” because it’s usually harder to identify as symptoms are typically minimal, if at all, present. It occurs when one or more bones in the spine do not form properly. The baby’s spinal cord and the tissues that surround it do not protrude outside of the body. At birth, there may be a small tuft of hair, dimple or birthmark on a newborn’s skin just above the spinal gap. This type of spina bifida rarely presents with any symptoms or disabilities, however. In rare cases, there are symptoms, which can be severe.
  • Closed neural tube defect: With this type of spina bifida, there may be fat, bone or membrane malformations on the spinal cord. There are generally few or no symptoms with this form of the condition. In some cases, it may be difficult for the child to walk and there may be associated urinary and bowel issues.
  • Spina bifida meningocele: This is the least common, and a moderate form of spina bifida. With meningoceles, the spinal cord is positioned properly and has developed normally, while the tissue that covers it protrudes outward. This forms a fluid-filled sac under the skin. The meningocele can be repaired during infancy, through surgery. There are generally no neurological problems involved with the condition.
  • Spina bifida myelomeningocele: This is the most common and serious form of spina bifida. It is often referred to as “open spina bifida” because the spinal canal is exposed across multiple vertebrae. This kind of spina bifida results in a fluid-filled sac containing a section of the spinal cord and nerves, that protrudes from the fetus’ back. Hydrocephalus, excessive build up of spinal fluid in/around the brain, occurs in approximately 70 to 90 percent of infants born with myelomeningocele. This is due to a defect at the base of the skull. The condition can cause swelling of the head, and if left untreated, brain damage, seizures and blindness. Children with this form of spina bifida may have weakness or paralysis below the area of the spine affected, along with bladder and bowel issues.

Our treatment and management approaches

Spina bifida can manifest in a number of ways, from major complications to mild symptoms that don’t require as much medical intervention. Shriners Hospitals for Children is active in the most up-to-date research, leveraging evidence-backed treatment to help children with spina bifida live their best lives.

Our team is comprised of experienced pediatric orthopaedists, neurologists, urologists, and pediatricians with expertise in spina bifida care.

Common spina bifida treatments and therapies include:

  • Surgery: Surgical interventions depend on the individual associated conditions. Children with myelomeningocele may require surgery to protect the spinal cord from future trauma, reduce excess fluid on or around the brain, or possibly restore some level of function. Others may benefit from surgical procedures to improve or manage symptoms impacting their hips, feet or legs.
  • Physical therapy: This intervention helps children with spina bifida work on their balance, and muscle strength and coordination, especially if their hips, legs or feet have been affected by the condition.
  • Occupational therapy: This treatment zeros in on strengthening fine motor skills that have been impacted by spina bifida.
  • Orthotics: Bracing provides affected lower extremities and often the spine the support to promote maximum function and prevent further deformity.

Conditions, treatments and services provided may vary by location. Please consult with the Shriners Hospitals for Children location nearest you. See zip code search feature to the right.

Request an Appointment

Most major insurance providers are accepted; however, insurance coverage is not required for care. Any child under 18 with a medical condition or medical need that is within the health care system’s scope of services, is eligible for care. Shriners Hospitals for Children offers financial assistance to those in need.

Find a Location Near You

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22 Locations Across North America

Location Specialties
  • Burn Care
  • Craniofacial and Cleft Lip/Palate
  • Neuromuscular
  • Orthopaedics
  • Orthotics and Prosthetics
  • Pediatric Surgery
  • Spinal Cord Injury
  • Sports Injury and Fractures
  • Therapy and Rehabilitation

Notice: Treatments and services vary by location. Contact nearest hospital for specific details.

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