Living with Spina Bifida

At a glance

  • No two people with spina bifida are exactly alike.
  • Health issues for people with spina bifida will be different for each person.
  • Finding resources, knowing what to expect, and planning for the future can help.
Person with spina bifida exercising with a friend

Everyday life

Mobility

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

Using the bathroom

People with spina bifida often cannot control when they go to the bathroom (incontinence). They also can develop urinary tract infections.

Skin

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

Other potential health issues

Some people with spina bifida have difficulty with:

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

Taking care of yourself or loved ones

Physical activity

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, which are often free in many communities.
  • Enjoy recreation areas with accessible playgrounds.
  • Do exercises recommended by a physical therapist.
  • Attend summer camps that are accessible for those with disabilities.
  • Participate in sports and teams for people with or those without disabilities.
Young man with spina bifida riding on a handcycle exercising
Regular activity is important, particularly for people with conditions that affect movement.

Hip Function

National Center on Health, Physical Activity, and Disability (NCHPAD) Spina Bifida Guidelines

Bathroom plan

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 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.

SBA's Urologic Care and Management information

Skin care

Checking skin regularly for redness, including under braces, is important for people with spina bifida and their parents and caregivers to identify skin problems before they become pressure sores.

  • Avoid hot bath water, heaters, hot dishes, hot car seats, and metal seatbelt clasps since they may cause burns.
  • Make sure you are always wearing properly fitting shoes, 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. These materials were written by age and are available in English and Spanish.
Did You Look? Skin Integrity Bundle

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.

Talking to your doctor

Every person needs a primary care provider, such as a pediatrician or general family doctor. 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.

Resources by age

Baby being held by an adult

Infants

Learn about health issues and treatments for infants with spina bifida.
toddler in a wheelie

Toddlers

Understanding health issues for toddlers with spina bifida can help families care for their child.
Girl in wheelchair rolling through park

School-Aged Children

Children with spina bifida may have different health needs and school-related issues.
Two teens in wheelchairs moving on a track

Adolescents and Teens

Knowing health issues and guidelines for teens with spina bifida can help prepare them as they grow.
Young adult with spina bifida

Young Adults

About half of people living with spina bifida are adults. They can have complex health needs. 

Resources

Spina Bifida guidelines by age

Print
Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  • Sandler, Adrian, M.D.(2004). Living with Spina Bifida: A Guide for Families and Professionals. University of North Carolina Press: Chapel Hill.
  • Spina Bifida Association. Guidelines for the Care of People with Spina Bifida. 2018. http://www.spinabifidaassociation.org/guidelines/
  • Primary Children's Medical Center (2008). Let's Talk about Spina Bifida.