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


Advice for parents

After an initial diagnosis, it can be scary and daunting thinking about how best to care for your child. Lots of children can lead full and fulfilling lives. This section tells you what to expect at different points in your child’s development, as well as help and advice.

Living with spina bifida

Many people we speak to who are living with spina bifida aren't being seen by specialists regularly to check up on their health.

This section has been written to help you avoid some of the common health problems associated with spina bifida, and to help you know what to ask your GP to do to help you. So you can enjoy life to the full.

Practical advice

Support with living

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

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




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 

Join the fight for fortification

Shine are campaigning for the mandatory fortification of flour with folic acid, an initiative proven to reduce neural tube defects such as spina bifida and anencephaly by up to 70% in more than 80 countries across the world.

Find out more

FREE membership, join today!

As a member of the Shine family, you'll receive:

  • FREE access to national and regional support groups
  • Invitations to national and regional events
  • A network of friends and peers to help you
  • FREE help and advice from our trained specialists
  • A FREE copy of our twice yearly magazine, Together
  • Option to join our FREE home delivery service

Join the Shine family

Donate Become a member