Spina Bifida

Introduction

The Questions and Answers that follow aim to provide an introduction to spina bifida for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.
ThisMore information about many topics relevant to children with spina bifida and many other chronic conditions and their families can be found in the left menu. Detailed information aimed at primary care doctors can be found in our Spina Bifida module.

What is spina bifida?

Spina bifida is a neural tube defect (NTD), which results from abnormal development of the spinal cord and/or the bone surrounding the spinal cord. Very mild defects may cause no significant problems for the child. Severe defects may cause paralysis/weakness of the legs, bladder and bowel problems, and abnormal development of the brain and kidneys.
At birth, children with more severe NTDs will have a spinal cord that is not covered by the usual bone and skin (called a myelomeningocele or a meningocele) that will need surgical repair.

How do you get spina bifida?

The cause of NTDs is not known, though folic acid supplementation during pregnancy can decrease their frequency.

What are the symptoms?

Depending on the type and location of the defect, symptoms range from none or very mild to severe symptoms that may include loss of movement or tightness in the legs, bladder, kidney, and bowel problems, and hydrocephalus (commonly known as water on the brain).

How is it diagnosed?

Many neural tube defects are obvious on prenatal ultrasound and at birth. Spina bifida is often found at the 20-week ultrasound, and further testing is usually needed to confirm the diagnosis, including MRI. X-rays, ultrasound, and MRI may be used after birth for more detailed evaluation.

What is the expected outcome?

This will depend on the severity of the NTD and its location. Defects very low in the spinal cord cause fewer problems. Children with higher and more severe defects may have problems with use of their legs, kidney and bladder problems, and problems related to brain development. Surgery before or after birth can repair the defect in the skin. Early intervention by specialists and ongoing management may improve outcomes.
It is possible for people with more severe spina bifida to live an independent life. Life expectancy for people with spina bifida varies based on the location and severity of the neural tube defect and the problems that result.

Will anyone else in the family get spina bifida?

The genetics of neural tube defects are not well-understood. Families of children with this condition are often referred to a geneticist or receive genetic counseling to discuss the risk for future children. In general, there is a one in five chance of having another baby with spina bifida.

What is the treatment?

Open neural tube defects are closed within the first few days of life by neurosurgeons. Children with major NTDs will often undergo a series of evaluations looking for related problems. Some families who are pregnant with children with neural tube defects have fetal surgery, where the defects are closed before birth, often within the first 25 weeks of pregnancy. Children with spina bifida may also need ongoing treatments such as physical therapy and speech therapy.

How will my family's life be changed?

Based on the severity and location of the defect and associated conditions, children with NTDs may have major challenges throughout life. These may include problems with bowel and bladder function, hydrocephalus, seizures, learning problems, muscle and bone problems, and others. These issues may require more support and understanding from family members. Supports may include working with speech therapists and occupational therapists, use of a wheelchair, and modifications to the family’s home or car.

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 often 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 sensation problems at birth. Subtle problems may appear in later childhood or adulthood. In many cases, spina bifida occulta will cause no problems at all.
  • Meningocele. The protective layers around the spinal cord (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 often no nerve damage. People may suffer minor disabilities.
  • Myelomeningocele. 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 and results in nerve damage and more severe disabilities (2012).

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

In the U.S., there are 65 million women of childbearing age and each one may be 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) happen 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
  • Medically-diagnosed obesity
  • High temperatures in early pregnancy (i.e., prolonged fevers, hot tub use that raises the body temperature, hot yoga)
  • 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 (2012)

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 starts to work toward urinary continence is based on their physical abilities 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. To gain urinary continence, it will be vital to adhere to a consistent voiding (urination) program. This voiding program may include medications, intermittent catheterization, and possibly operative reconstruction. When a urinary continence program is started, 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 vital for a child to maintain an appropriate stool consistency which can be achieved by a food plan that includes plenty of fluid and extra fiber if needed. Even when the stool is of normal consistency, some children need help eliminating the stool from their rectum and colon. A doctor can recommend various techniques (2012).

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 may need extra assistance with education. They may have to leave class often to manage catheterization, and may need to have a nurse with them during school. The many physical concerns to focus on may reduce their focus on education and progress in school may come later or be slower.
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 different learning abilities than students without spina bifida. See Learning Problems in Children with NTD. Although not clearly proven for the population of children with spina bifida, we believe that help 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 reach the best possible outcome in his life. See all Educational Advocacy (see UT providers [29]) in our database.

Resources

Information & Support

For Parents and Patients

Spina Bifida Association
A voluntary health agency, with 57 chapters, offers programs, education, advocacy, research updates and services nationwide. Has information and resources for all ages, including expectant parents.

Hydrocephalus Association
An excellent resource that offers education, research, advocacy and support to eliminate the challenges of hydrocephalus.

March of Dimes Spina Bifida Information
Easy-to-read information from the March of Dimes on neural tube defects.

Spina Bifida (Let's Talk About.... PCH) (PDF Document)
This page contains basic information for parents about spina bifida and includes pictures.

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

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Last update/revision: June 2019
Current Authors and Reviewers:
Reviewer: Natalie Brower-Rasmussen
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.