Living with Spina Bifida

Everyday life

Mobility

People affected by spina bifida get around in different ways. They might walk without any assistance, walk with braces, crutches or walkers, or use a wheelchair.

The location of the spinal defect influences how a person with spina bifida gets around. People with a spine defect higher on their spine (near the head) might have paralyzed legs and use wheelchairs. Those with a spine defect 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. Staying active is important to keep people with spina bifida healthy. Activities like adaptive sports can play an important role in the prevention of obesity and related health conditions.

Using the bathroom

Spina bifida often impacts bladder function and people can have problems emptying their bladders or leaking urine. This can make people with spina bifida more likely to develop urinary tract infections (UTIs) and kidney damage.

Having a plan for going to the bathroom in various settings is important for most people with spina bifida. Healthcare providers can help develop a plan which may include special bladder treatments or surgery to help with bladder control. Having a bathroom plan can help prevent urinary tract infections and make it easier to get around for people with spina bifida.

Skin Care

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

People should check their child's skin regularly for redness by carefully looking at important spots like under braces, areas that can become wet or damp, and areas that are constantly pressed or squeezed. It is important for people with spina bifida, their parents, and caregivers to find and treat skin problems early.

Latex Allergy

Many people spina bifida are sensitive to latex, or natural rubber. Signs of latex reaction range from skin rash or redness to breathing difficulties. Common products that can contain latex include baby nipples and pacifiers, urinary catheters, disposable gloves, and condoms. Contact your healthcare provider if you have concerns about a latex allergy or notice signs of an allergic reaction.

Safety

Safety is an important issue for people with spina bifida. They can be at higher risk for injuries and abuse. As children become more independent and later become teenagers and young adults, caregivers should teach them how to stay safe and what to do if they feel threatened.

Talking to your doctor

Coordinating Healthcare

Everyone needs a primary care provider, like a pediatrician or general family doctor. In addition, a person with spina bifida will need doctors who focus on different parts of the body and might suggest treatments or surgeries to help with problems.

These specialists might include:

• An orthopedist, who works with muscles and bones
• A urologist, who checks the kidneys and bladder
• A neurosurgeon, who checks the brain and spine

Resources