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Spina Bifida Program

The Spina Bifida Program at The Barbara Bush Children’s Hospital (BBCH) provides comprehensive evaluation and recommendations for treatment and ongoing care for the child with spina bifida and related disorders.

Spina bifida is part of a group of genetic birth defects called neural tube defects. The neural tube is the structure in an embryo that eventually develops into a baby’s brain and spinal cord and the tissues that enclose them. In babies with spina bifida, part of the neural tube fails to develop properly, resulting in defects in the spinal cord and the bones of the spine.

There are four types of spina bifida, and treatment depends on how severe the condition is:

  • Occulta is the mildest and most common form in which one or more vertebrae are malformed. The name “occulta,” which means “hidden,” indicates that the malformation, or opening in the spine, is covered by a layer of skin. This form of spina bifida rarely causes disability or symptoms.
  • Closed neural tube defects consist of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone or membranes. In some patients there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.
  • In Meningocele, the meninges (the protective covering around the brain and spinal cord) protrude from the spinal opening, and the malformation may or may not be covered by a layer of skin. Some patients with meningocele may have few or no symptoms while others may experience symptoms similar to closed neural tube defects.
  • Myelomeningocele is the most severe form of spina bifida and occurs when the spinal cord is exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening.

The Spina Bifida Program at BBCH includes a monthly clinic headed by a board-certified pediatrician with advanced subspecialty training in genetics, with follow-up and continuity of care provided by a certified pediatric nurse. Neurosurgery, Urology, Nephrology, Orthopedics, and other allied health practitioners are involved.

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The Barbara Bush Children's Hospital is a department of Maine Medical Center