Health Issues & Treatments for Spina Bifida

Stethoscope head lying on medical forms closeup

No two people with spina bifida are exactly alike. Health issues and treatments for people with spina bifida will be different for each person. Some people have issues that are more severe than other people. Those born with “open” spina bifida usually have more health issues and need more types of treatments.

Some health issues and treatments related to spina bifida include the following:

Open Spina Bifida

Sometimes when a baby has open spina bifida, or myelomeningocele, doctors will perform surgery to close the spine before the baby is born.

This surgery is a major procedure for the mother and the baby, and may not be available where you live. Contact a doctor who works regularly with spina bifida babies and expectant mothers about the pros and cons of this option. The Spina Bifida Association offers information for expectant parents.external icon

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.

For more information, please visit the following websites:

Hip Functionexternal icon

Early Intervention Programs for Infants and Toddlers

National Center on Health, Physical Activity and Disability (NCHPAD)- Spina Bifida Guidelinesexternal icon

Adaptive Physical Education Disabled Sports USAexternal icon

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.

Did You Look?

The Spina Bifida Association created the Did You Look? materials to help patients maintain healthy skin.

Please see links below:

Poster (English) pdf icon[2.15 MB / 1 page]external icon
Infant Brochure (English) pdf icon[751 KB / 2 pages]external icon
School Age Brochure (English) pdf icon[535 KB / 2 pages]external icon
Adolescent/Adult Brochure (English) pdf icon[592 KB / 2 pages]external icon

Poster (Spanish)image iconexternal icon
Infant Brochure (Spanish) pdf icon[741 KB / 2 pages]external icon
School Age Brochure (Spanish) pdf icon[524 KB / 2 pages]external icon
Adolescent/Adult Brochure (Spanish) pdf icon[583 KB / 2 pages]external icon

Reference

  1. Dicianno BE, Wilson R. Hospitalizations of adults with spina bifida and congenital spinal cord anomalies. Archives of Physical Medicine and Rehabilitation 2010 Apr;91(4):529-35.

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.

Other Concerns

Some people with spina bifida have difficulty with:

  • Learning
  • Relating to others
  • Vision
  • Staying at a healthy weight
  • Depression

References

Sandler, Adrian, M.D.(2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.

Merkens, Mark J., M.D. and the Spina Bifida Association’s Professional Advisory Council (2006). Guidelines for Spina Bifida Health Care Services Throughout the Lifespan. Third Edition. Spina Bifida Association.

Primary Children’s Medical Center (2008). Let’s Talk about Spina Bifida.