Spina bifida living

Overview

Spina bifida is a condition that happens when the baby's spine and spinal cord do not form completely in the first month of pregnancy. This causes a gap in the spine. The spinal cord and nerves can be damaged, leading to problems with movement, feeling, and bowel and bladder control. The condition varies from mild to severe.

Spina bifida is one of the most common birth defects of the spine. About 1 in 1,000 babies are born with it, but the number varies around the world.

Spina bifida is present from birth and affects both boys and girls. Many cases are found during pregnancy or just after birth. With support, most people with spina bifida go to school, work, and take part in everyday life.

Symptoms

Common symptoms

• A visible gap or bulge on the back, in more severe forms
• Weakness or numbness in the legs and feet
• Trouble with bladder or bowel control
• A build-up of fluid in the brain (called hydrocephalus)
• Difficulties with walking or balance

Symptoms in children

• Delays in learning to walk or sit
• A curved spine (scoliosis)
• Challenges with toilet training
• Sensitivity or weakness in the legs
• Problems with learning or attention

Symptoms in older adults

• Joint pain and stiffness, especially in the hips and knees
• Increased tiredness with walking or standing
• More frequent urinary tract infections
• Changes in how well the bladder or bowel works
• Pressure sores on the skin

Causes

Main causes

• The exact cause is not fully known. It happens when a structure called the neural tube fails to close completely in the first month of pregnancy.
• It is likely caused by a mix of genetic, nutritional, and environmental factors.

Risk factors

• Low levels of folic acid (a B vitamin) in the mother before and during early pregnancy
• A family history of spina bifida or other neural tube defects
• Some medicines taken during early pregnancy, such as certain anti-seizure medicines
• Diabetes that is not well controlled during pregnancy
• A higher body mass index (obesity) before pregnancy

When to see a doctor

See a doctor urgently if:

• If you notice any of the emergency or urgent symptoms listed above, call your care team or go to urgent care the same day.
• If your child with spina bifida has a high fever and headache, seek medical care quickly.
• If you think you may be pregnant, start talking with a healthcare professional about folic acid, prenatal care, and screening.

Book a routine appointment if:

• Keep up with regular appointments with your primary care doctor, neurologist, urologist, orthopedist, and physical therapist.
• Have regular skin, eye, and kidney checks as recommended by your care team.
• See your doctor if you notice any change in how you move, feel, or manage your bladder or bowel.

Diagnosis

Spina bifida is often found before birth during a routine ultrasound. A blood test can also show higher levels of a protein called AFP, which may be a sign of an opening in the spine. After birth, doctors can see an opening on the back or use imaging tests to look at the spine and brain.

Tests that may be done

• Prenatal ultrasound
• Maternal blood test for alpha-fetoprotein (AFP), if offered
• Amniocentesis, which tests the fluid around the baby, if needed
• Magnetic resonance imaging (MRI) after birth
• X-rays or CT scans to check the spine and brain, if needed

What to expect at your appointment

Your doctor will explain the type of spina bifida and how severe it is. You will meet a team of specialists who will help plan treatment and support. If spina bifida is found during pregnancy, you will talk about what to expect at birth and early care.

Treatment

There is no cure for spina bifida, but treatment can help manage symptoms and improve quality of life. Treatment usually involves a team of healthcare professionals working together to support your needs.

Self-care at home

• Keep the skin around the spine area clean, dry, and protected
• Move and stretch regularly to keep joints flexible
• Follow a routine to empty your bladder and bowels, if needed
• Eat foods high in fibre to avoid constipation
• Check your skin daily for pressure sores or redness

Medical treatments

Medical treatments may include medicines to help with bladder control, nerve pain, or muscle spasms. Some people need catheters to help empty the bladder. Physical therapy, occupational therapy, and mobility aids like braces or wheelchairs are also important parts of treatment. Your doctor will talk with you about what is best for your situation.

When is surgery considered?

Surgery is often done soon after birth to close an opening in the spine and protect the nerves. For fluid on the brain, a thin tube called a shunt may be placed to drain extra fluid. Later surgery may be needed for bladder problems, bowel issues, or bone and joint problems.

Living with this condition

Most people with spina bifida live independently or with some support. The focus should be on your abilities and on using tools that help you stay active, such as a walker or wheelchair if needed. Building a daily routine can make it easier to manage health needs and enjoy life.

Lifestyle tips

• Use adaptive tools, like a long-handled grabber or toilet aids, to make daily tasks easier
• Stay active in ways that are safe for your back, like swimming
• Plan for rest breaks if you feel tired
• Keep up with school, work, hobbies, and friendships
• Protect your feelings and ask for help when you need it

Diet and exercise

A diet rich in fibre from fruits, vegetables, and whole grains can help avoid constipation. Drinking enough water also helps. Exercise like swimming, arm cycling, and gentle stretching can improve strength and mood without putting too much stress on your back.

Mental health and emotional wellbeing

Living with a long-term condition can sometimes bring stress, worry, or sadness. These feelings are normal and important to talk about. If you feel anxious or depressed, speak to your doctor or a mental health professional. If you ever feel unsafe or in crisis, reach out to a mental health helpline or call your local emergency number right away.

Prevention

Not all cases of spina bifida can be prevented, but taking a daily folic acid supplement before and during the early months of pregnancy greatly lowers the risk. If you are planning a pregnancy, talk to your doctor or midwife about folic acid.

Vaccines

Making sure a woman is vaccinated against rubella before pregnancy can help prevent certain birth defects, but it does not directly prevent spina bifida. Ask your healthcare professional about recommended vaccinations.

Screening programmes

During pregnancy, screening tests can help find spina bifida before birth. These may include a blood test, an ultrasound, or sometimes amniocentesis. Your doctor or midwife will explain what screening is available and what it can tell you.

Complications

If left untreated

• Without treatment, spina bifida can cause increasing nerve damage over time
• Loss of muscle strength or feeling in the legs
• Repeated urinary infections that can damage the kidneys
• A build-up of fluid in the brain that can cause brain damage
• Pressure sores that become infected

Long-term outlook

Although spina bifida is a lifelong condition, the outlook is generally hopeful. With early treatment, good self-care, and a strong support network, most people with spina bifida grow up to lead productive, meaningful lives. There are always challenges, but many helpful treatments and supports are available today.

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