Spina Bifida

What is spina bifida?

Spina bifida — a term that means “split spine” — is a condition that occurs when the brain, spinal cord or the membranes that cover them (meninges) do not completely develop. It is the most common neural tube defect in the U.S.

What are the different types of spina bifida?

There are four major types of spina bifida:

  • Spina bifida occulta (hidden). This is mildest and most common form of the condition. It occurs when one or more of the bones in the spine (vertebrae) don’t properly form. As many as 10 to 20 percent of all people have this type of spina bifida. Although it rarely causes symptoms or disability, a small percentage of people do have symptoms. In some cases, these symptoms can be severe.
  • Closed neural tube defect. This is a type of spina bifida in which there are malformations of fat, bone or membranes on the spinal cord. Most children with this type of spina bifida have few or no symptoms. In some cases, it can cause difficulty walking or urinary and bowel dysfunction.
  • Meningocele. This is the least common type of spina bifida. It occurs when the membranes that cover the brain and spinal cord protrude through an opening in the spinal column. Some children with meningocele have only minor symptoms, while others have more serious problems with walking and bladder and bowel function.
  • Myelomeningocele. This is the most severe form of spina bifida. It occurs when the backbone and spinal cord fail to close and the spinal cord does not develop normally. Children with this type are often fully or partially paralyzed, have difficulty with bladder and bowel control, have orthopedic problems and may have inguinal drainage of cerebrospinal fluid (hydrocephalus). Cognitive challenges are also common.

What are the associated medical conditions found with spina bifida?

The complications of spina bifida vary widely, depending on the type and its severity.

Associated health problems can include:

Meet Adam

How we care for spina bifida

At the Boston Children’s Hospital Spina Bifida and Spinal Cord Conditions Center, our team works together to develop a personalized and coordinated care plan for your child. We provide age-appropriate care at each developmental stage. Our clinicians are all dedicated to spina bifida care and have many years of experience in treating children of all ages with this complex condition.

We are one of few centers in the world that offers complete coordination of care among all specialty areas. Our two dedicated nurse practitioners and administrative staff will coordinate all of your child’s care at each visit— from clinic visits to testing to surgery.

Boston Children’s Hospital is also the only spina bifida center in New England that provides transition care for adult spina bifida.

Our areas of innovation for spina bifida

Our clinicians are actively involved in research to develop new therapies to mitigate bladder deterioration and finding biomarkers to help diagnose spina bifida earlier as well as biomarkers for kidney and bladder deterioration. Our center has pioneered several innovative surgeries for spina bifida patients, including ETV/CPC, spinal cord detethering and robotic bladder augmentation.

Our Urodynamics Program was one of the first of its kind in the world and is responsible for many of the innovations in pediatric urodynamics today. Our program uses advanced technology to provide a unique and comprehensive understanding of bladder and nerve function, which we use to guide treatment.