New to spina bifida

If you, a friend or a loved one has just had a diagnosis for a type of spina bifida, or you are looking for more information on the conditions and treatment options, this section features information to help.

What is spina bifida?

Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord does not form properly, and may also be damaged.

Learn more about the condition

Related conditions

Alongside spina bifida, there a number of related conditions including tethered cord, anencephaly and hydrocephalus. You can find more information on these conditions in this section.

Read about related conditions

Information for Parents and Carers

Can't find what you're looking for?  Contact us directly for support and advice on any other topic.

Advice for professionals

People with spina bifida can be affected by their condition in a number of often subtle ways. The degree of impact varies a great deal. Some people may have few or no difficulties, others can find their day-to-day life very difficult indeed.

Shine can provide resources, answer questions, and assist with signposting.  We can also help with research recruitment and support, and can contribute to your continuing professional development. We invite you to explore our professional pages, and to sign up as a member to access more information and support. 

Professionals Resource Hub


We don’t know all the causes of spina bifida and anencephaly, but there are some ways to reduce your chances of an NTD affected pregnancy.  

This section contains important information and an opportunity to join our campaign for the mandatory fortification of flour with folic acid, an initiative proven to significantly reduce NTD’s in more than 80 countries across the world.

Lowering the chances

Genetic and environmental factors can contribute to the development of NTD’s during pregnancy. This section includes some useful do’s and don'ts as well as things to look out for to keep your chances to a minimum. 

Learn more about lowering the chances

Folic acid

Found in leafy green veg and readily available from your local chemist, taking folic acid is proven to reduce the chances of an NTD affected pregnancy by up to 70%.  A must read if you’re sexually active, even if babies aren’t on your mind just yet.

Learn more about folic acid 

Folic for Life

If you're sexually active, it's really important to take a 400mcg folic acid supplement every day, because you never know...

Shine's Folic for Life campaign aims to ensure all women have access to the information they need to reduce their chances of a Neural Tube Defect affected pregnancy.  Click for more information.

Spina Bifida Resources Hub

Whether you're living with or caring for someone with spina bifida, you'll love this easy to use resource hub.

We've pulled together our most popular information on a range of topics Shine members have told us are the most important to them.

For the first time, all of our most popular spina bifida resources will be available to access, order or download quickly and conveniently in one simple place.

View our spina bifida resources hub



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