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Spina Bifida Awareness Week: Raising awareness of the condition and vital support services available to families

This year’s Spina Bifida Awareness Week is taking place from 17 to 23 October. It aims to raise awareness of the condition and the vital services provided by Shine, the leading spina bifida charity.

What is Spina bifida?

Spina bifida or 'split spine' is a condition affecting the spine that occurs during early pregnancy. It develops when there's a fault in the development of a baby's spinal cord and vertebrae in the womb. This leaves a gap in the spine.

It's a type of neural tube defect. The neural tube is the structure that eventually develops into the brain and spinal cord; it 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 vertebrae. 

In many cases babies with spina bifida will also develop hydrocephalus, where further damage can happen as fluid builds up on the brain. 

How does it affect people?

Spina bifida is usually detected during the mid-pregnancy anomaly scan, between 18 and 21 weeks of pregnancy. Further tests may then be carried out once the baby is born to determine how severe the condition is and what treatment options are available.

The damage spina bifida causes to the nervous system can lead to problems such as weakness or paralysis of the legs, issues with bowel and bladder function, and some people with spina bifida can have learning difficulties.

The effects of spina bifida vary greatly, and those affected will experience different symptoms to varying degrees. Although many babies have surgery to close the opening in the spine shortly after birth, the nervous system will usually already have been damaged.

What are the risk factors?

The cause of spina bifida is unknown, but risk factors include:

  • Low folic acid intake during pregnancy
  • Family history of spina bifida
  • Medicines – taking certain medicines during pregnancy has been linked to an increased risk of a baby having spina bifida


Taking folic acid supplements before and during pregnancy can reduce the risk of your baby developing spina bifida. It's recommended that folic acid is taken daily for at least eight weeks prior to conception and through to the 12th week of pregnancy.

For those without a family history of spina bifida, the Department of Health recommends that you take an ‘over the counter’ dose of 400mcg daily.

For those thought to be at higher risk of having a child with spina bifida, a prescription dose of 5mg is recommended. Those at higher risk include families with a history of spina bifida or other neural tube defects, and those with diabetes. 

The charity Shine also recommends taking a B12 supplement (2.5mcg or more) for three months prior to conception.

What support is available?

Shine is a registered charity which provides specialist support to families and individuals affected by spina bifida and hydrocephalus. With around 12,000 members across England, Wales and Northern Ireland, Shine is Europe’s leading spina bifida charity.  

Its vision is to create a society that meets the needs, values the contribution and celebrates the lives of people living with spina bifida and hydrocephalus.

Shine offers many valuable services such as:

  • Benefits advice
  • Support groups and advice for those affected by spina bifida, their families and carers
  • Education advice for students, parents and professionals
  • Information guides covering topics such as going on holiday, driving and employment  
  • Wellbeing advice and top tips

Shine’s Legal Service

Irwin Mitchell is proud to work with Shine as part of its Legal Service scheme.

As specialist medical negligence solicitors we understand the devastating impact that poor medical care can have on individuals with spina bifida. That’s why we have partnered with Shine to provide its members with specialist legal advice and support.

David's story

Our client David was born with a form of spina bifida, myelomeningocele. This is one of the most severe forms of spina bifida, requiring surgery soon after birth. 

His parents, Jayne and Rob, were told that his condition would affect his walking and his bladder and bowel function too, along with requiring lifelong treatment to drain fluid from his brain.

Prior to his birth, his mother had been to all her routine scan appointments and was told that everything was “fine”, so his diagnosis came as a shock to Jayne and Rob. After he was diagnosed, our team of experts supported David’s parents in finding out whether his condition should have been picked up during pregnancy.

Our team was successful, and the Trust admitted that spina bifida should have been identified at the anomaly scan. The team’s success means David will now have access to the specialist therapies and support he needs.

Find out more about Irwin Mitchell’s expertise in supporting individuals and families affected by spina bifida and other healthcare issues at our dedicated medical negligence section.