Health A to Z
Spina bifida is when a baby's spine and spinal cord don't develop properly in the womb, causing a gap in the spine.
Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby's brain and spinal cord.
The neural tube starts to form in early pregnancy and closes about four weeks after conception.
In spina bifida, part of the neural tube doesn't develop or close properly, leading to defects in the spinal cord and bones of the spine (vertebrae).
It's not known what causes spina bifida, but a lack of folic acid before and in the early stages of pregnancy is a significant risk factor.
This page covers:
There are several different types of spina bifida, including:
These pages focus on myelomeningocele, the most severe type of spina bifida and this is the type referred to whenever the term spina bifida is used.
Shine is a charity that provides help and support for people affected by spina bifida. Shine's website has more information about the other types of spina bifida.
In most cases of spina bifida, surgery can be used to close the opening in the spine. However, the nervous system will usually already have been damaged, which can lead to problems such as:
Many babies will have or develop hydrocephalus (a build-up of fluid on the brain), which can further damage the brain.
Most people with spina bifida have normal intelligence, but some have learning difficulties.
Read more about the symptoms of spina bifida.
The cause of spina bifida is unknown, but a number of factors can increase the risk of a baby developing the condition, including:
Read more about the causes of spina bifida.
Most cases of spina bifida are detected during the mid-pregnancy anomaly scan, which is offered to all pregnant women between 18 and 21 weeks of pregnancy.
If tests confirm that your baby has spina bifida, the implications will be discussed with you. This will include a discussion about the possible problems associated with the condition, the treatment and support your child may need if you decide to continue with the pregnancy, and what your options are regarding ending the pregnancy, if that is your choice.
Once the baby is born, a number of tests may be carried out to assess the severity of the condition and help decide which treatments are appropriate.
Tests may include:
In most cases, surgery to repair the spine will be recommended soon after your baby is born.
Treatments for the symptoms or conditions associated with spina bifida include:
With the right treatment and support, many children with spina bifida survive well into adulthood. It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives.
Read more about treating spina bifida.
The best way to prevent spina bifida is to take folic acid supplements before and during pregnancy.
You should take a 400 microgram folic acid tablet every day while you're trying to get pregnant and until you're 12 weeks pregnant.
If you didn't take folic acid before you conceived, you should start as soon as you find out you're pregnant.
Folic acid tablets are available from pharmacies and supermarkets, or your GP may be able to prescribe them for you.
You should also try to eat foods that contain folate (the natural form of folic acid), such as broccoli, spinach and chickpeas.
Read more about folic acid, including folic acid supplements and foods containing folate.
Women thought to be at higher risk of having a child with spina bifida need to be prescribed a higher (5 milligram) dose of folic acid by their GP.
Women at higher risk include those:
Your GP can advise you further about this.
If you're taking medication to treat epilepsy, you should consult your GP for advice. You may also need to take a higher dose of folic acid.
If you have a child with spina bifida, or if you've been diagnosed with the condition yourself, you may find it helpful to speak to other people affected by spina bifida.
Shine, the spina bifida and hydrocephalus charity, can provide you with details about local support groups and organisations.
Spina bifida can cause a wide range of symptoms, including problems with movement, bladder and bowel problems, and problems associated with hydrocephalus (excess fluid on the brain).
The severity of the symptoms of spina bifida varies considerably, largely depending on the location of the gap in the spine.
A gap higher up the spine is more likely to cause paralysis of the legs and mobility difficulties compared with gaps in the middle or at the base of the spine, which may only cause continence issues.
A baby is more likely to have learning difficulties if they develop hydrocephalus.
The brain controls all the muscles in the body with the nerves that run through the spinal cord. Any damage to the nerves can result in problems controlling the muscles.
Most children with spina bifida have some degree of weakness or paralysis in their lower limbs. They may need to use ankle supports or crutches to help them move around. If they have severe paralysis, they'll need a wheelchair.
Paralysis can also cause other, associated problems. For example, as the muscles in the legs aren't being used regularly, they can become very weak.
As the muscles support the bones, muscle weakness can affect bone development. This can cause dislocated or deformed joints, bone fractures, misshapen bones and an abnormal curvature of the spine (scoliosis).
Many people with spina bifida have problems storing and passing urine. This is caused by the nerves that control the bladder not forming properly. It can lead to problems such as:
Due to the risk of infection, the bladder and kidneys will need to be regularly monitored. Ultrasound scans may be needed, as well as tests to measure the bladder's volume and the pressure inside it.
The nerves that run through the spinal cord also control the bowel and the sphincter muscles that keep stools in the bowel.
Many people with spina bifida have limited or no control over their sphincter muscles and have bowel incontinence.
Some babies with spina bifida have hydrocephalus (excess fluid on the brain), which can damage the brain and cause further problems.
Many people with spina bifida and hydrocephalus will have normal intelligence, although some will have learning difficulties, such as:
They may also have problems with visual and physical co-ordination – for example, tasks such as tying shoelaces or fastening buttons.
Some babies have a problem where the lower parts of the brain are pushed downwards towards the spinal cord. This is known as type 2 Arnold-Chiari malformation and is linked to hydrocephalus.
Hydrocephalus can cause additional symptoms soon after birth, such as irritability, seizures, drowsiness, vomiting and poor feeding.
Read more about the symptoms of hydrocephalus.
Other problems associated with spina bifida include:
It's not known what causes spina bifida but a number of things can increase the risk of a baby developing the condition.
Not having enough folic acid during pregnancy is one of the most important factors that can increase your chances of having a child with spina bifida.
Folic acid (also known as vitamin B9) occurs naturally in some foods, such as broccoli, peas and brown rice. It's also added to foods, such as some breakfast cereals. Folic acid tablets are available from pharmacies and supermarkets, or your GP may be able to prescribe them for you.
It's estimated that taking folic acid supplements before you conceive and while you're pregnant may prevent up to 7 out of 10 cases of neural tube defects, such as spina bifida.
It's still unclear how folic acid helps prevent spina bifida. It's likely that folic acid is needed for important biochemical reactions in the body.
Read more about why you need folic acid in pregnancy.
Having a family member with a neural tube defect, such as spina bifida, increases your chances of having a baby with spina bifida.
If you've previously had a child with spina bifida, your chance of having other children with the condition is significantly increased – from less than 1 in 1,500 to around 1 in 25.
If you have a family history of spina bifida, it's very important that you take high-dose folic acid, prescribed by your GP before you become pregnant, and for at least the first 12 weeks of pregnancy.
Taking certain medications during pregnancy has been linked to an increased risk of having a baby with spina bifida or other birth defects.
Doctors will try to avoid prescribing these medications if there's a chance you could get pregnant while taking them, but they may be needed if the alternatives aren't effective.
It's advisable to use a reliable form of contraception if you need to take one of these medications and aren't trying to get pregnant.
Tell your doctor if you're thinking about trying for a baby and you need to take one of these medications. They may be able to lower the dose and prescribe folic acid supplements at a higher than normal dose, to reduce the risk of problems.
If you're not sure whether a medication could affect your pregnancy, check with your doctor, midwife or pharmacist before taking it. Never stop taking a prescribed medication unless your GP or another healthcare professional responsible for your care advises you to.
If your baby is found to have spina bifida and it's thought they may also have one of these syndromes, you'll be offered a diagnostic test, such as amniocentesis or chorionic villus sampling that can tell for certain if your baby has one of these genetic conditions.
Other risk factors for spina bifida include:
If your child is diagnosed with spina bifida, they'll be referred to a specialist team who will be involved in their care.
A care plan may be drawn up to address your child's needs and any problems they have. As your child gets older, the care plan will be reassessed to take into account changes to their needs and situation.
There are several different treatments for the various problems spina bifida can cause. These are described below.
In babies with spina bifida, nerves and membranes can push out of an opening in the spine and form a sac. This damages the nerves and can lead to serious infections, so your baby will usually have surgery to repair the spine within 48 hours of birth.
During surgery, the surgeon will put the spinal cord and any exposed tissues or nerves back into the correct place. The gap in the spine is then closed and the hole sealed with muscle and skin.
Although this will repair the defect, unfortunately it can't reverse any nerve damage.
Surgery is usually needed if your child has hydrocephalus (excess fluid on the brain). The surgeon will implant a thin tube called a shunt to drain away excess fluid to another part of the body, usually the tummy.
In most cases, the shunt remains in place for the rest of the child's life. Further surgery may be needed if:
Physiotherapy is an important way of helping someone with spina bifida to become as independent as possible. The main aim is to help with movement, prevent deformity, and stop the leg muscles weakening further.
This may involve daily exercises to help maintain strength in the leg muscles, as well as wearing special splints to support the legs.
Occupational therapy can help people find ways to carry out everyday activities and become more independent.
An occupational therapist can help work out practical solutions to problem areas such as getting dressed. They may for example provide equipment, such as handrails, to make the activity easier.
People who are unable to use their legs at all will usually require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help to maintain good upper body strength.
Leg braces, splints and other walking aids can be used by people who have weak leg muscles.
Read more about treating paralysis and choosing mobility equipment, wheelchairs and scooters.
Further corrective surgery may be needed if there are problems with bone development, such as hip dislocation or club foot (a deformity of the foot and ankle). This type of surgery is known as orthopaedic surgery.
Many people with spina bifida have problems controlling their bladder.
Treatments for bladder problems include:
Read more about urinary incontinence.
Bowel problems, particularly constipation, are often a problem for people with spina bifida.
Treatments for bowel problems include:
Read more about bowel incontinence.
Most children with spina bifida have a normal level of intelligence and are often be able to attend a mainstream school.
However, they may need support to help with any learning disabilities they have, as well as any physical problems, such as incontinence.
If you think your child may need extra support at school or nursery, talk to their teacher or the special educational needs co-ordinator (SENCO).
Read more about special educational needs (SEN).