Spina Bifida


Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Spina Bifida module, which is written for primary care clinicians but also may be of help to parents and family members.

What is spina bifida and what causes it?

Neural tube defects (NTDs), including spina bifida, are a group of conditions where a newborn has incomplete or abnormal development of the bone surrounding the spinal cord and/or the spinal cord. These defects cause problems ranging from a spinal cord that is not covered by the usual bone and skin, a myelomeningocele or a meningocele, to asymptomatic abnormalities in the bone that usually protects the spinal cord (spina bifida occulta). In children with significant spine and neurologic defects, such as myelomeningocele, there are often associated abnormalities in the way the brain has formed and in kidney development. Neural tube defects are multifactorial. Folic acid supplementation has led to a decrease in their frequency, and some genetic syndromes are known to be associated with them, but there are clearly other causes that are not yet well understood.

What are the symptoms spina bifida?

Symptoms vary depending on the type of defect and may include loss of movement in the lower extremities, problems with bladder and bowel function, hydrocephalus, lower extremity spasticity, and others. Children with spina bifida occulta have minimal symptoms.

How is it diagnosed?

Many neural tube defects are obvious at birth. Spine MRI, X-rays, and ultra-sound may be used to get better diagnostic information.

What is the prognosis?

This will depend on the severity of the neural tube defect and its location. Defects very low in the spinal cord are less likely to cause symptoms than those further up in the cord. Individuals with only a minor malformation of the spinal cord, such as fatty tissue associated with the end of the spinal cord, have fewer symptoms than those children born with myelomeningocele in which the spinal cord, the nerve coming from it, and associated tissues are covered only by a membrane in the child's back.

What is the risk for other family members or future babies?

The genetics of neural tube defects are not well-understood. Generally, families of children with this condition are referred to a geneticist or receive genetic counseling to discuss the risk for future babies.

What treatments/therapies/medications are recommended or available?

Open neural tube defects are closed within the first few days of life by neurosurgeons. Children with significant neural tube defects will usually undergo a series of evaluations looking for associated problems. Some families who are pregnant with chidren with neural tube defects have fetal surgery where the defects are closed before birth.

How will my child and our family be impacted?

Children with severe neural tube defects will have significant deficits in later life, depending on the severity and location of the defect and associated conditions. These may include problems with bowel and bladder function, hydrocephalus, seizures, learning problems, orthopedic problems, and others.

Are there different types of spina bifida? (question and answer from the Spina Bifida Association)

Yes there are three types of spina bifida:
  • Occulta. Often called hidden spina bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of spina bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood. In many instances, spina bifida occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.
  • Meningocele. The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.
  • Myelomeningocele. This form of spina bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of spina bifida which causes nerve damage and more severe disabilities.

Who is at risk for spina bifida? (question and answer from the Spina Bifida Association)

In the United States, there are 65 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by spina bifida. Birth defects can happen in any family. In fact, 95 percent of neural tube defects (NTDs) occur in women with no personal or family history of NTDs. However, according to the CDC, some risk factors are known:
  • A previous NTD-affected pregnancy increases a woman's chance to have another NTD-affected pregnancy by approximately 20 times
  • Maternal insulin-dependent diabetes
  • Use of certain anti-seizure medication (valproic acid/Depakene, and carbamazapine/Tegretol)
  • Medically-diagnosed obesity
  • High temperatures in early pregnancy (i.e., prolonged fevers and hot tub use that raises the body temperature)
  • Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women)
  • Lower socio-economic status

How can I help my child achieve urinary continence and bowel control? (question and answer from the Spina Bifida Association)

The age at which a child begins to work toward urinary continence is individualized based on their physical capabilities and social situation. It is practical to consider urinary continence when a child enters school. While this is a realistic goal, it may not be appropriate for all children. In order to gain urinary continence it will be important to adhere to a consistent voiding program. This voiding program may include medications, intermittent catheterization, and possibly operative reconstruction. When a urinary continence program is initiated, it should be continued while the child is in a structured school environment. It is practical to consider bowel continence at the same time a child is working toward urinary continence. It is essential for a child to maintain an appropriate stool consistency which can be achieved by a diet that includes plenty of fluid and fiber. Some children benefit from fiber supplementation. Even when the stool is of normal consistency, some children need to have assistance in eliminating the stool from their rectum and colon. There are various techniques recommended including digital manipulation, rectal suppositories, and enemas. When enemas are employed, only the very terminal end of the colon is washed free of the stool leaving the bulk of stool in the remainder of the colon.

Why isn't my child doing better in school? He has spina bifida at a low level and I've been told his IQ is normal.

This is a complicated question. Children with spina bifida have been noted to perform less well in school and achieve less than other individuals of the same intelligence (as measured by IQ). There are many reasons to think that the brains of children with spina bifida, even those with low lesions, may also be affected by the same early developmental process that caused the spina bifida. Children with spina bifida, even those with few complicating problems, like hydrocephalus and seizures, are noted to have higher verbal IQs than performance IQs, giving them a different learning and achievement profile than individuals without spina bifida. See Learning Problems in Children with NTD. Although not specifically proven for the population of children with spina bifida, we believe that assistance from an Early Intervention Part C Program and school intervention are helpful for children with special needs. Continue to be an advocate for your child at school to help him achieve the best possible outcome in his life. See see all Educational Advocacy services providers (3) in our database.

What’s the Agent Orange Benefit Act and what does it cover? (question and answer from the Spina Bifida Association).

The Agent Orange Benefits Act is a law that established a benefits package for children of Vietnam veterans who were born with spina bifida, possibly as a result of exposure of one or both parents to herbicides during active service in the Republic of Vietnam during the Vietnam era. The Agent Orange Benefits Act authorized the Department of Veterans Affairs (VA) to provide certain benefits effective October 1, 1997. These benefits include lifetime health care services for spina bifida and "any disability associated" with spina bifida, a monthly monetary allowance ranging from $200-$1,200, and Veterans Affairs (VA) vocational training/rehabilitation services. The VA defines spina bifida as all forms of spina bifida (except spina bifida occulta). To apply for benefits call the Department of Veterans Affairs at 1-888-820-1756.


Information & Support

Where can I go for further information?

For Parents and Patients


Children and adults with spina bifida website
Excellent site including basic medical, surgical, and educational information with patient and family discussion lists

Hydrocephalus Association
Education, research, advocacy and support to eliminate the challenges of hydrocephalus.


March of Dimes Spina Bifida Information
Information from the March of Dimes on neural tube defects.

Spina Bifida (KidsHealth)
Family-focused information about spina bifida, from the Nemours Foundation.

Spina Bifida (Let's Talk About.... PCMC) (PDF Document)

Spina Bifida (MedlinePlus)
From the National Library of Medicine; basic information and numerous links to other reliable sources.

Spina Bifida Handout (PDF Document 961 KB)
This 24-page document explains spina bifida, medical terms, diagnosis, symptoms, managment, latex precautions, and more, from the Southwest Institute for Families and Children with Special Needs.

Spina Bifida Association
A voluntary health agency, with 57 chapters, offers programs, education, advocacy, research updates and services nationwide.

Spina Bifida for Kids (KidsHealth)
Patient-focused information about spina bifida, from the Nemours Foundation.

Spina bifida fact sheet (NINDS)
Extensive information on spina bifida compiled by the National Institute of Neurological Disorders and Stroke, NIH.

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Authors & Reviewers

Initial publication: October 2012; last update/revision: January 2016
Current Authors and Reviewers:
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.