Spina bifida

Spinal dysraphism, hydrocephalus

What is spina bifida?

Spina bifida is a birth defect that affects the neural tube, which is the structure that develops into a baby’s brain and spine. It is characterised by a gap in a baby’s spine due to the spine not developing properly during pregnancy.

What causes spina bifida?

The exact cause of spina bifida is unknown but there are certain risk factors that can increase a baby’s chances of developing it such as:

  • A lack of folic acid during pregnancy
  • A family history of the condition
  • Taking certain medications during pregnancy.

What are the symptoms of spina bifida?

While the gap in the spine can be fixed, damage to the nervous system caused by it may result in the following symptoms:

  • Weakness/paralysis in the legs
  • Bowel and urinary incontinence
  • Loss of skin sensation in the legs
  • Hydrocephalus which is a build-up of fluid on the brain
  • Learning difficulties.

Are you affected by spina bifida?

If you’re affected by spina bifida, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with spina bifida, emotional support such as counselling, phone befriending and group therapy and social activities to people with spina bifida from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with spina bifida

We support carers, friends and family too

Are you a carer for or relative of someone with spina bifida? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including spina bifida, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity’s library

The Brain Charity’s library has a range of resources on spina bifida and on many other disability-related issues.

Visit our library to read:

Spina Bifida by NHS.

What is Spina Bifida? by Shine.

Living With Spina Bifida: A guide for families and professionals by Adrian Sandler.

Or search the catalogue online here.

Support groups

The Shine Family

Free membership that provides help, advice and support from staff with specialist knowledge on spina bifida and access to a network of people who are also affected by the condition.

Website: www.shinecharity.org.uk/become-a-member

Phone: 0173 355 5988

Email: info@shinecharity.org.uk

Brain & Spine Foundation Neuro Carers

Monthly online support group that provides an opportunity for carers of those who have a neurological condition to meet others and to give each other support.

Website: www.brainandspine.org.uk

Phone: 08088081000

Email: helpline@brainandspine.org.uk

The Brain Charity

Are you interested in setting up a spina bifida support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Other charities


Shine provides advice, support and information to those affected by spina bifida.

Website: www.shinecharity.org.uk

Phone: 01733555988

Email: info@shinecharity.org.uk

Brain & Spine Foundation

The Brain & Spine Foundation aims to improve the lives of those affected by neurological problems through providing information, education and support.

Website: www.brainandspine.org.uk

Phone: 08088081000

Email: helpline@brainandspine.org.uk