Health Issues & Treatments

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

When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it before birth or within the first few days of the baby’s life.

A recent study funded by the National Institutes of Health (The Management of Myelomeningocele Study) and published in The New England Journal of Medicine found that performing surgery to close the opening on the back of the fetus before birth greatly reduces the need to divert, or shunt, fluid away from the brain. The surgery also increases the chances that a child will be able to walk without crutches or other devices. However, infants who had this prenatal surgery were more likely to be born preterm than were the infants who had the surgery after birth, when it is typically performed. Read the article.

 

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 Spina Bifida Association website:
Hydrocephalus and Shunts in the Person with Spina Bifida

 

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:
Tethered Spinal Cord

 

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 Function

Early Intervention Programs for Infants and Toddlers 

Special Education Services for Preschoolers with Disabilities

National Center on Physical Activity and Disability (NCPAD) – Spina Bifida Guidelines

Accessible State Parks and Recreational Areas

Accessible Summer Camps

Disabled Sports USA

 

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 websites:

Urologic Care and Management

Bowel and Bladder Needs and Care

 

Skin

People with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. However, they might not know when these develop because they might not be able to feel certain parts of their body.

Ways to help protect the skin:

• Check the skin regularly for redness, including under braces.
• Try to avoid hot bath water, hot irons and hot or unpadded seatbelt clasps that may cause burns.
• Make sure to wear properly fitting shoes at all times.
• 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 Bifida

 

Health Checks

Every person needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). 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.