Spina Bifida

Overview

Spina bifida is a condition that happens before birth when the spine and spinal cord do not form normally. It occurs when the neural tube, the early structure that becomes the brain and spinal cord, does not close completely in the first few weeks of pregnancy. This can leave the spinal cord and nerves exposed or damaged. The effects range from very mild to severe, depending on the type and location.

Spina bifida is one of the more common birth defects of the nervous system, but overall it is still uncommon. The number of cases has fallen in many countries since folic acid recommendations and routine screening were introduced.

Spina bifida affects babies before they are born. It can affect people of every ethnic group and background. It is slightly more common in girls for some types. Anyone can have a baby with spina bifida, but certain factors like low folic acid levels, family history, some medicines, and poorly controlled diabetes can increase the risk.

Symptoms

Common symptoms

• A visible opening or sac on the lower back (in more severe forms)
• Weakness, numbness, or loss of feeling in the legs or feet
• Difficulty controlling the bladder or bowels
• Hydrocephalus, a build-up of extra fluid in the brain, which can cause a large head size or pressure symptoms
• Learning difficulties, especially with memory, problem-solving, or attention

Symptoms in children

• Delays in reaching milestones like sitting, crawling, walking, or potty training
• Curved spine (scoliosis), hip problems, or unusual foot shape
• Repeated urinary tract infections
• Pressure sores or skin injuries, especially areas with reduced feeling
• Needing extra help in school with reading, maths, or staying focused

Symptoms in older adults

• New or worsening back pain, muscle weakness, or numbness in the legs
• Worsening bladder or bowel symptoms
• Shunt problems that cause headaches, vomiting, or changes in vision
• Balance problems and a higher risk of falls
• Tiredness, joint pain, and pressure-area pain from mobility aids or sitting for long periods

Causes

Main causes

• The exact cause of spina bifida is not fully understood. It is believed to involve a combination of genetic and environmental factors.
• It happens when the neural tube fails to close completely during the first month of pregnancy, before many mothers know they are pregnant.
• Spina bifida is not caused by anything the parents did or did not do. It is nobody's fault.

Risk factors

• Low levels of folic acid before and in early pregnancy
• A family history of neural tube defects
• Certain medicines taken in early pregnancy, such as some anti-seizure medicines
• Diabetes that is not well controlled before pregnancy and in early pregnancy
• Obesity before pregnancy
• High body temperature in early pregnancy, such as from a high fever or hot tub use

When to see a doctor

See a doctor urgently if:

• Contact your GP or local health advice service the same day if you or your child has new leg weakness, numbness, back pain, or changes in bladder or bowel control.
• If you are pregnant and have any concerns about screening, or if you have a family history of spina bifida, speak to your midwife or GP early.
• Seek urgent advice if you notice rapid head growth, a red or leaking area on the back, or signs of a urinary tract infection.

Book a routine appointment if:

• Make an appointment with your GP if you have spina bifida and notice any gradual change in symptoms, mobility, or pain.
• If you are planning a pregnancy and have spina bifida yourself or have had a previous child with spina bifida, arrange a preconception appointment with your GP or specialist.
• Keep up with routine medical reviews, even if you feel well.

Diagnosis

Spina bifida is often found before birth during a routine pregnancy ultrasound scan, usually around 18 to 22 weeks of pregnancy. After birth, doctors can usually see the signs on a baby's back if the condition is more severe. Imaging tests are used to look at the spine, spinal cord, and brain in detail.

Tests that may be done

• Maternal blood test during pregnancy that measures a protein called alpha-fetoprotein (AFP), which may be higher in neural tube defects
• Detailed ultrasound scan of the baby during pregnancy
• Amniocentesis, a test that takes a small sample of the fluid around the baby, in some cases
• MRI or CT scan after birth to look at the spine and brain in detail
• Ultrasound of the brain and spine after birth

What to expect at your appointment

If spina bifida is found before birth, you will be seen by a specialist team who will explain the type, what it means, and the care options during pregnancy and after birth. After diagnosis, your child will be referred to a specialist service. You will not be left to manage on your own. The team will usually include doctors, surgeons, nurses, physiotherapists, occupational therapists, and social workers.

Treatment

There is no cure for spina bifida, but many of its effects can be treated and managed. Treatment depends on the type and how severe it is. People with the mildest form may need little or no treatment. Those with more severe forms often need surgery soon after birth, followed by long-term support from a team of specialists. The aim is to protect the spinal cord, manage symptoms, and help each person reach their full potential.

Self-care at home

• Check your skin daily for redness, pressure sores, or irritation, especially on the back, hips, feet, and areas that have less feeling.
• Drink plenty of water and eat high-fibre foods to prevent constipation.
• Follow a regular bladder and bowel routine, and use the support your care team recommends.
• Stay active in ways that feel comfortable and enjoyable.
• Take all medicines as prescribed by your health care team, and ask about any side effects.
• Attend regular check-ups with your GP and specialist team.

Medical treatments

Medical treatment is planned by specialists. After birth, a baby with a more severe form may need surgery to close the opening in the spine, usually within the first day or two of life. If there is hydrocephalus, a small tube called a shunt may be placed in the brain to drain extra fluid, or another procedure may be used instead. Bladder and bowel problems may be managed with medicines prescribed by a doctor, clean intermittent catheterization, or a toilet programme. Physiotherapy, occupational therapy, and aids such as braces or wheelchairs are also important. Your health care team will explain all options and help you choose what is best.

When is surgery considered?

Surgery is usually needed for myelomeningocele, the most serious type, and is done soon after birth to protect the spinal cord from infection and further damage. In some specialist centres, surgery before birth (fetal surgery) may be offered in certain situations. Your surgical team will talk through the risks and benefits with you carefully.

Living with this condition

Life with spina bifida looks different for everyone. Many people live well at home, at school, at work, and in their communities. Day-to-day life may include physiotherapy, walking aids or a wheelchair, bladder and bowel routines, and regular appointments. Building a trusted care team and keeping a clear health summary can help things run smoothly.

Lifestyle tips

• Stay physically active in ways that suit your body, such as swimming, hand cycling, wheelchair sports, or stretching exercises.
• Pace your activities and take rest breaks to avoid fatigue and pain.
• Make your home and workplace accessible with ramps, grab bars, adapted toilets, and other aids if needed.
• Check pressure areas regularly and change positions often if you sit in a wheelchair for long periods.
• Plan ahead for travel, appointments, and emergencies.

Diet and exercise

A balanced diet with plenty of fibre, fruit, vegetables, and enough water is important for people with spina bifida, especially to prevent constipation and support bladder health. Exercise should be matched to your ability and comfort. A physiotherapist can help you create a safe plan that strengthens muscles, protects joints, and keeps your heart healthy.

Mental health and emotional wellbeing

Living with a lifelong condition can sometimes be stressful or lonely. It is normal to feel worried, frustrated, or low at times. Talking to a counsellor, joining a support group, or sharing feelings with family and friends can help. If you feel down most of the day, lose interest in things you enjoy, or have thoughts of harming yourself, please speak to your GP or a trusted health care professional — support is available.

Prevention

Spina bifida cannot always be prevented, but the risk can be greatly reduced. Taking a daily folic acid supplement as advised by your doctor before pregnancy and during the first few months of pregnancy is the most important step. Your doctor may recommend a higher amount if you have had a previous pregnancy affected by spina bifida or if you take certain medicines. Managing diabetes, avoiding overheating, and reviewing medicines with your doctor before pregnancy can also help reduce risk.

Vaccines

There is no vaccine that prevents spina bifida, but staying up to date with recommended vaccinations before pregnancy supports overall health.

Screening programmes

During pregnancy, routine screening can detect many cases of spina bifida. If you have any concerns, ask your midwife or doctor about the screening options available, including blood tests and ultrasound scans.

Complications

If left untreated

• Damage to the spinal cord can lead to permanent weakness, loss of feeling, and difficulty moving the legs.
• Untreated hydrocephalus can cause dangerous pressure inside the brain, leading to brain damage or life-threatening illness.
• Bladder and bowel problems that are not managed can cause repeated urinary tract infections, kidney damage, and serious infections.
• Pressure sores can become infected and are harder to heal when feeling is reduced.
• Infections in or around the spinal cord can be very serious and require urgent medical care.

Long-term outlook

The outlook for spina bifida depends on the type and the care a person receives. With modern surgery, therapies, and support, most children born with spina bifida grow up to lead active and meaningful lives. They go to school, build friendships, work, and take part in their communities. There may be challenges, but with a strong care team and a positive support network, there is great hope for the future.

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