Living with spina bifida living

Overview

Spina bifida is a condition that happens before birth when the spine and spinal cord do not form properly. It is a type of birth defect called a neural tube defect. The nerves in the spine may be damaged, which can affect movement, feeling, and other body functions like going to the bathroom.

It is not very common, but it is one of the most common birth defects of the brain and spine. Around 1 in every 1,000 babies is born with spina bifida in the UK, though numbers vary across the world.

Spina bifida affects both boys and girls and people of all ethnic backgrounds. It begins very early in pregnancy, often before a woman knows she is pregnant. It can affect people for their whole lives, from infancy through adulthood.

Symptoms

Common symptoms

• Weakness or numbness in the legs
• Problems with bladder or bowel control
• Difficulty walking or moving
• Learning difficulties
• Too much fluid on the brain, called hydrocephalus
• Curved spine, such as scoliosis
• Sensitivity or changes in skin on the back

Symptoms in children

• Delays in learning to sit, crawl, or walk
• Muscle weakness in the legs or feet
• Loss of bowel or bladder control
• A visible sac or opening on the baby's back (for serious types)
• Problems with coordination or balance

Symptoms in older adults

• Increased tiredness or weakness in the legs
• New or worsening pain in the back or legs
• More frequent urinary tract infections
• Skin sores from sitting or lying in one position
• Difficulty with walking or balance
• Changes in memory or concentration

Causes

Main causes

• The exact cause is not always known.
• It happens when the neural tube, which becomes the brain and spine, does not close fully in early pregnancy.
• A mix of genetic and environmental factors plays a role.

Risk factors

• Not getting enough folic acid before and during early pregnancy
• Having a family history of spina bifida
• Some medicines taken during pregnancy, such as some anti-seizure drugs
• Having diabetes or obesity before pregnancy
• Increased body temperature during early pregnancy, such as from a high fever or hot tubs

When to see a doctor

See a doctor urgently if:

• Go to urgent care or call your local emergency number if you have a sudden severe headache, repeated vomiting, seizures, or sudden weakness.
• Also get immediate help if you notice a red, painful, or swollen area on the back, or fluid leaking from a surgical site.

Book a routine appointment if:

• See your doctor regularly for check-ups by your spina bifida team.
• If you have new numbness, weakness, or changes in bladder or bowel habits, tell your doctor the same day.
• Ask for help if you notice skin sores, pain, or signs of a urinary tract infection like burning when you pee.

Diagnosis

Spina bifida is often found before birth during routine pregnancy scans. After birth, a doctor can usually see signs of it by examining the baby. If the opening is not visible, imaging tests may be used.

Tests that may be done

• Ultrasound scan during pregnancy
• A blood test called alpha-fetoprotein (AFP) that checks a protein in the mother's blood
• Amniocentesis: a test where a small amount of fluid is taken from around the unborn baby
• MRI or CT scans to look closely at the spine and brain
• Physical and nerve tests after birth

What to expect at your appointment

If your baby is diagnosed with spina bifida, you will meet a team of specialists. This can feel frightening, but the team will explain each step and support your choices. After birth, your baby may need frequent check-ups, but many families adjust and find a good routine.

Treatment

There is no cure for spina bifida, but treatment can help manage symptoms and prevent many problems. The aim is to keep your body working well and help you be as active and independent as possible.

Self-care at home

• Keep your skin clean and dry, and check it daily for pressure sores.
• Do gentle exercises or stretches to keep joints and muscles flexible.
• Follow a regular bowel and bladder routine, as suggested by your care team.
• Use supportive equipment like braces, wheelchairs, or walking aids if they help you.
• Take care of your mental health by making time for things you enjoy and talking about your feelings.

Medical treatments

Treatment usually involves a team of health professionals, including surgeons, physiotherapists, occupational therapists, and specialist nurses. Medicines may be used to help control bladder and bowel symptoms or to manage pain, but you should never start or stop any medicine without your doctor's advice. Physical therapy and occupational therapy can improve strength, coordination, and everyday skills.

When is surgery considered?

Most babies with the more serious form of spina bifida have surgery soon after birth to close the opening in the spine and protect the nerves. If there is extra fluid on the brain, a small tube called a shunt may be placed to drain it. Surgery can also be done later in life to help with mobility, bowel, or bladder issues.

Living with this condition

Living with spina bifida means learning a daily routine that protects your health. For many people, a good routine includes checking the skin, managing bladder and bowel health, and taking part in regular physical activity. Adapt your surroundings at home and work so they work for you, and allow time for rest when you need it.

Lifestyle tips

• Stay active in a way that is safe for your body, such as swimming or wheelchair sports.
• Get the right amount of sleep to help your body recover.
• Avoid smoking and limit alcohol, as they can affect blood flow and bone health.
• Stay up to date with appointments and screenings with your spina bifida team.

Diet and exercise

A balanced diet rich in vegetables, fruit, whole grains, and protein can help you keep a healthy weight and avoid pressure sores. Drinking plenty of water helps prevent urinary tract infections. Exercise can improve strength, balance, and mood. Work with your physiotherapist to find activities that are enjoyable and safe for you.

Mental health and emotional wellbeing

Living with a lifelong condition can sometimes be tough, and it is normal to feel a range of emotions such as worry, frustration, or sadness. Talking to family, friends, or a counsellor can help. If you are struggling, please reach out — you do not have to cope alone. If you are having thoughts of self-harm or suicide, please contact emergency services or a crisis line right away.

Prevention

Spina bifida cannot always be prevented, but taking folic acid before and during early pregnancy greatly reduces the risk. If you are planning a pregnancy, speak to your doctor about taking a daily folic acid supplement as recommended in your country.

Screening programmes

During pregnancy, routine scans and blood tests can check for spina bifida. If you are at higher risk, your doctor may offer additional screening tests.

Complications

If left untreated

• Hydrocephalus, or fluid on the brain, which can damage brain tissue if not treated
• Urinary tract infections that can harm the kidneys
• Pressure sores that can become infected
• Loss of muscle strength or ability to walk
• Learning difficulties or attention problems

Long-term outlook

With good medical care, most people with spina bifida live a full and meaningful life. Many people go to school, work, form relationships, and enjoy hobbies. The key is staying connected with your healthcare team and taking small steps each day to protect your health. There is always hope, and every improvement matters.

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