Below is a list of possible complications related to Spina Bifida. It is important to keep in mind everyone is different. Some may have paralysis while others may just experience weak muscles. Multiple surgeries, especially during childhood is common. Things tend to stabilize as a person gets older.

Hydrocephalus

Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.

If a baby with spina bifida has hydrocephalus, a surgeon can put in a shunt. A shunt is a small hollow tube that will help drain the fluid from the baby’s brain and protect it from too much pressure. Additional surgery might be needed to change the shunt as the child grows up or if it becomes clogged or infected.

For more information, please visit the Hydrocephalus Associationexternal icon website

Spina Bifida Association fact sheet
Hydrocephalus and Shuntsexternal icon

Tethered Spinal Cord

Many people with open spina bifida have tethered spinal cords. Normally, the bottom of the spinal cord floats around freely in the spinal canal. A tethered spinal cord is attached to the spinal canal. When this happens, the spinal cord stretches as a person grows, which can permanently damage the spinal nerves. The person might have back pain, scoliosis (crooked spine), leg and foot weakness, changes in bladder or bowel control, and other problems. A tethered spinal cord can be treated with surgery.

For more information, please visit the Spina Bifida Association website:
Spinal Cord Tetheringexternal icon

Mobility and Physical Activity

People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

• Engage in active play with friends.
• Roll or walk in the neighborhood.
• Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities and Special Education Services for Preschoolers with Disabilities, which are free programs in many communities.
• Enjoy parks and recreation areas with playgrounds that are accessible to people with disabilities.
• Do exercises recommended by a physical therapist.
• Attend summer camps and recreational facilities that are accessible for those with disabilities.
• Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.

Using the Bathroom

People with spina bifida often cannot control when they go to the bathroom (incontinence). They also can develop urinary tract infections. It is important to develop a plan for going to the bathroom that works and is as simple as possible. This can lead to increased health, participation, and independence, and avoid embarrassment for people with spina bifida. Healthcare providers can help develop a plan for each person. A tube (catheter) inserted in the bladder can help drain urine. In some cases, extra fiber can be added to the diet to keep bowel movements regular. Surgery also might be recommended.

For more information, please visit the Spina Bifida Association website:

Urologic Care and Managementexternal icon

Skin Care

Children and adults living with spina bifida may have limited feeling in some areas of their body, leaving them unable to feel cuts, bruises, sores, and dry skin. Since a person with spina bifida may not know they have been hurt, they may be unable to tell a parent or caregiver that they need help.

Pressure sores occur when there is prolonged pressure on soft tissue, skin, and muscle. Healthcare professionals report skin wounds as one of the primary diagnoses associated with the hospitalization¹ of people with spina bifida. Pressure sores can lead to infection, amputation, or even death.

By checking skin regularly for redness including under braces, people with spina bifida, along with their parents and caregivers, can identify skin problems before they become pressure sores.

Additional ways to protect the skin:

• Avoid hot bath water, heaters, hot dishes, hot car seats, and metal seatbelt clasps, since they may cause burns.
• Make sure you are wearing properly fitting shoes at all times, even when swimming.
• Use sunscreen, and don’t stay out in the sun too long.
• Do not sit or lie in one position for too long.

Latex (Natural Rubber) Allergy

Many people with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. For babies, this would include rubber nipples and pacifiers. A person with this type of allergy can wear a bracelet to alert other people of the allergy.

For more information, please visit the Spina Bifida Association website:
Latex (Natural Rubber) Allergy in Spina Bifidaexternal icon

Health Checks

Every person needs a primary care provider, such as a pediatrician, nurse practitioner, general family doctor, or internist. The primary care provider will want to make sure that he or she is healthy; developing normally; and receiving immunization against diseases and infections, including the flu.

In addition to seeing a primary health care provider, a person with spina bifida will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the person.

These specialists might include:

• An orthopedist, who will work with muscles and bones.
• A urologist, who will check the kidneys and bladder.
• A neurosurgeon, who will check the brain and spine.

Chiari Malformation

Chiari malformation type I occurs when the section of your skull containing a part of your brain (cerebellum) is too small or is deformed, thus putting pressure on and crowding your brain. The lower part of the cerebellum (tonsils) is displaced into your upper spinal canal.

Chiari malformation type II is nearly always associated with a form of spina bifida called myelomeningocele.

When the cerebellum is pushed into your upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid that protects your brain and spinal cord.

This impaired circulation of cerebrospinal fluid can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord.

Alternatively, the pressure from the cerebellum on the spinal cord or lower brainstem can cause neurological signs or symptoms.