Spina bifida

Spina bifida is when a baby's spine and spinal cord don't develop properly in the womb, causing a gap in the spine. The risk of having a child with spina bifida is higher for women with a family history of the disease or partners with a family history.

About spina bifida

Spina bifida is a type of neural tube defect. The neural tube is the structure that 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).

Types of spina bifida

There are several different types of spina bifida, including:

  • myelomeningocele – the baby's spinal canal remains open along several vertebrae in the back, allowing the spinal cord and protective membranes around it to push out and form a sac in the baby's back
  • meningocele – the protective membranes around the spinal cord (meninges) push out through the spine; the spinal cord usually develops normally so surgery can often be used to remove the membranes without damaging the nerves
  • spina bifida occulta – one or more vertebrae don't form properly but the gap in the spine is very small; spina bifida occulta doesn't usually cause any problems and most people are unaware that they have it

This page focuses on myelomeningocele, the most severe type of spina bifida. This is the type referred to whenever the term spina bifida is used.

Symptoms of spina bifida

In most cases of spina bifida, surgery can be used to close the opening in the spine. The nervous system will usually already have been damaged.

This 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.

Causes 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:

  • low folic acid intake during pregnancy
  • having a family history of spina bifida
  • taking certain medications during pregnancy

Diagnosing 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
  • what your options are regarding ending the pregnancy, if that is your choice

Tests after birth

Once the baby is born, tests may be carried out to assess the severity of the condition and help decide which treatments are appropriate.

Tests may include:

  • monitoring your child's head growth and carrying out a brain scan, using an ultrasound scan, CT scan or MRI scan, to check for hydrocephalus (excess fluid on the brain)
  • ultrasound scans of the bladder and kidneys to check if your baby stores urine normally
  • an assessment of your baby's movements to check for paralysis

In most cases, surgery to repair the spine will be recommended soon after your baby is born.

Treating spina bifida

Treatments for the symptoms or conditions associated with spina bifida include:

  • surgery soon after birth to close the opening in the spine and treat hydrocephalus
  • therapies to help make day-to-day life easier and improve independence, such as physiotherapy and occupational therapy
  • assistive devices and mobility equipment, such as a wheelchair, or walking aids
  • treatments for bowel and urinary problems

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 lives.

Preventing spina bifida with folic acid

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
  • chickpeas

 

Recommendations for women at higher risk of spina bifida

Women thought to be at higher risk of having a child with spina bifida need to be prescribed a higher dose of folic acid by their GP.

Women at higher risk include those:

  • with a family history of neural tube defects
  • with a partner with a family history of neural tube defects
  • who've had a previous pregnancy affected by a neural tube defect
  • with diabetes

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.

Help and support

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.

The information on this page has been adapted from original content from the NHS website.

For further information see terms and conditions.

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