On this page

• What Is Spina Bifida?
• Signs and Symptoms
• How Is It Diagnosed?
• How Can a Physical Therapist Help?
• Can This Injury or Condition Be Prevented?
• What Kind of Physical Therapist Do I Need?

What Is Spina Bifida?

A baby’s neural tube forms during the first month of pregnancy and develops into the brain and spinal cord. Spina bifida occurs when the neural tube does not fully close during early pregnancy. When this happens, the bones protecting the spinal cord do not form correctly. Spina bifida often results in damage to the spinal cord and surrounding nerves. This lack of closure may occur anywhere along the spinal cord. That can be from higher areas (like the neck) to the low back. Spina bifida is a condition that a person has for their entire life.

The three most common types of spina bifida are:

• Myelomeningocele. This condition produces a visible sac on the baby's back. It occurs when nerve tissue, the spinal cord, and spinal fluid push through an opening somewhere along the spinal column. It results in nerve damage. This can limit a person's ability to move and function in basic life activities. Physical limitations, such as weakness and loss of feeling, can range from moderate to severe. This is the most severe form of spina bifida.
• Meningocele. This condition produces a visible sac on the baby's back. Nerve tissue and spinal fluid push through an opening in the spinal column. Physical limitations are generally minor.
• Spina bifida occulta. This condition occurs when a gap forms in one or more vertebrae (bones) of the spine. Spina bifida occulta is often referred to as "hidden." There is no visible sac on the baby's back, and a layer of skin covers the defect. Nerve damage generally does not occur. Spina bifida occulta rarely causes motor symptoms and may go unnoticed. This is the most common and mildest form of spina bifida.

Signs and Symptoms

Spina bifida may cause both physical and cognitive (mental processing) limitations. These can range from mild to severe. How severe they are depends upon:

• The size and location of the opening in the spine.
•  How much of the spinal cord and nerves are involved.
• Other medical or health concerns associated with spina bifida.

Spina bifida in the lower levels of the spine and spinal cord is more common. When the defect is higher in the spine, it usually causes more physical challenges and symptoms. The Spina Bifida Association offers a helpful graphic showing how the location of the neural tube defect affects function.

Where the neural tube defect is located along the spine determines which parts of the body have movement (motor) or sensation (sensory) changes. Each area of the spinal cord controls movement and sensation for specific parts of the body as follows:    

• Cervical section (neck area) – arms and hands.
• Thoracic section (upper back area) – trunk and abdomen.
• Lumbar section (lower back area) – legs.
• Sacral section (below the low back into the tailbone area) – parts of the legs, as well as the bowel and bladder.

Some common symptoms in spina bifida include:

• Difficulty moving the legs for activities such as crawling and walking.
• Poor or reduced blood flow in the legs from limited muscle use. This increases the risk of pressure sores on the skin. Healing of wounds can be difficult.
• Weak bones and joints, or bones that are shaped differently.
• Decreased sensation or feeling in the affected parts of their body.
• Challenges with going to the bathroom or controlling both bowel and bladder functions.
• Challenges with sexual function.
• Sensitive skin, including latex allergies.    

Overall, physical signs will be related to the level of defect. Based on the spinal level and the nerves involved, a child with spina bifida’s mobility can vary. Some children may walk without any support. Others may use a walker. Some may use a wheelchair for their primary way to move. This will vary from child to child based on their strength, sensation, and mobility.

Other common medical conditions may occur with spina bifida. These may include:

• Chiari II malformation (deformity). This condition occurs when part of the brain pushes through the opening at the bottom of the skull. It may cause headaches, neck pain, and trouble swallowing or speaking.
• Hydrocephalus. This develops when too much fluid builds up in and around the brain. The fluid increases pressure on the brain. Doctors may insert a shunt (a surgically-placed device) in the head) to move the fluid away from the brain. A person with this condition may have learning and attention challenges.
• Tethered spinal cord. This occurs when part of the spinal cord attaches or ‘tethers’ to the damaged part of the spine. This causes the spinal cord to stretch as it grows. This condition may lead to pain or further changes in mobility, bladder function, or spinal alignment.

How Is It Diagnosed?

Doctors often diagnose spina bifida during pregnancy through:

• Ultrasound.
• Amniocentesis (testing the amniotic fluid surrounding the baby).
• A blood test of the mother to determine levels of AFP (alpha-fetoprotein). The baby’s liver makes this protein and passes it into the mother’s blood. When the level is too high, it can be a sign of conditions such as spina bifida.

Spina bifida often is detected as early as 16 to 18 weeks of pregnancy. However, if the spinal opening is small or hidden, it may not be found until birth or until a child’s movement difficulties are observed. An X-ray helps doctors diagnose these cases.

Babies born with meningocele and myelomeningocele usually need surgery within the first few days after birth. In some cases, surgery may be done before the baby is born if the mother and baby meet certain requirements. Surgery before birth can help the child be more mobile. It also may prevent related health concerns. One risk of surgery during pregnancy is premature delivery (early birth).

After birth, your physical therapist can help determine how much your child can move their body. They also assess how much your child can feel (sensation) in the areas affected by their spina bifida.

How Can a Physical Therapist Help?

Can This Injury or Condition Be Prevented?

The exact cause of spina bifida is unknown. Scientists believe genetics, nutrition, and environmental factors may contribute. There is no sure way to prevent spina bifida. However, taking the recommended amount of folic acid before and during early pregnancy may lower the chances of spina bifida. Other ways women can lower risk include managing or avoiding:

• Certain medicines (check with your OB-GYN).
• Diabetes and obesity.
• Physical therapy can help people with spina bifida prevent other problems, such as:
• Obesity.
• Contractures (limited joint movement). This is caused by tightened and shortened muscles and tissues that connect or support organs and bones.
• Fractures (breaks in the bones).
• Scoliosis (a condition in which the backbone curves to the side).
• Pressure sores (skin breakdown from changes in sensation and circulation).

Physical therapists identify activities to encourage movement and muscle strength. This promotes lifelong health and wellness. They will work with you and your child to design a program tailored to your child's unique needs and movement goals.

What Kind of Physical Therapist Do I Need?

All physical therapists are prepared through education and experience to treat a variety of conditions or injuries. You may want to consider:

• A physical therapist who is experienced in pediatrics and developmental disorders. Some physical therapists have a pediatric practice focus. They may work in a clinic, a home, a school, or a community setting.
• A physical therapist who is a board-certified clinical specialist or who has completed a residency or fellowship in pediatric or neurological physical therapy. This physical therapist has advanced knowledge, experience, and skills in developmental conditions, including spina bifida.
• An experienced pediatric physical therapist who also understands the importance of working with other health care providers to achieve the best possible outcomes for people with spina bifida.

You can find physical therapists in your area with these credentials and clinical expertise on Find a PT, a tool built by the American Physical Therapy Association.

General tips when you are looking for a physical therapist (or any other health care provider):

• Get recommendations from family, friends, or other health care providers.
• Ask about the physical therapists' experience in helping children with spina bifida or other developmental disorders.
• Be prepared to describe your symptoms as fully as possible during your first visit. Make a note of what makes these symptoms better or worse.

The APTA Academy of Pediatric Physical Therapy contributed to this consumer resource. It is for informational purposes only and is not intended to represent the position of APTA Pediatrics.

Further Reading

• Spina Bifida Association. https://www.spinabifidaassociation.org. This webpage includes links to downloadable resources for families, individuals with spina bifida and providers. The materials promote education, research, advocacy, and support.
• Spina Bifida Association. https://www.spinabifidaassociation.org/life-with-spina-bifida/ This webpage provides links to resources by age, life stage, or relationship to spina bifida.
• National Institutes of Health, National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/spina-bifida. This webpage provides information about spina bifida, including types, current research options, and ways to get involved in improving care.
• March of Dimes. https://www.marchofdimes.org/find-support/topics/planning-baby/spina-bifida. This webpage provides information on spina bifida, resources/support for families, and ways to get involved.