Reaching Families and Amaze Factsheet
Reaching Families and Amaze have worked in partnership to produce a series of informative factsheets written by parent-carers for parent carers. These include a series of factsheets on specific conditions designed to be used by parents when they receive their child's diagnosis, to help them get a better understanding of their child's condition and understand what support is available to them locally. This series of factsheets have been reviewed by NHS clinicians. Parent-carers were involved at all stages of the editorial process.
What is spina bifida?
Spina bifida is a congenital disorder in the growth of the spine and spinal cord that leaves a gap in the spinal column – the bone that protects the nerves. It is sometimes known as ‘split spine’. the mildest form of spina bifida (spina bifida occulta), is very common and may affect as many as five to ten per cent of people and yet as symptoms are rare, most will not know they have it. More serious forms of spina bifida occur in about 1 in 1,000 births in the UK.
Characteristics of spina bifida
Spina bifida is usually evident from birth. It causes a range of signs and symptoms that vary in each individual. the severity of symptoms depends on where the opening occurs on the spine and whether the baby also develops hydrocephalus, or excess fluid on the brain, which can result in learning difficulties. Other symptoms may include paralysis and/or muscle weakness, bowel or urinary incontinence.
Types of spina bifida
The three main types of spina bifida that are present at birth are:
• Spina bifida cystica the visible sign of spina bifida cystica is that there is a sac or cyst, similar to a blister on the back, covered by a thin layer of skin. This type of spina bifida has two forms:
1) Type one is called Myelomeningocele – this is the more common of the two types of cystic spina bifida. It is also the more serious form of the condition. the sac contains tissue, cerebro-spinal fluid and also nerves and part of the spinal cord, which is damaged or not properly developed. As a result of this, there is usually some paralysis and loss of sensation below the sac. Many people will also have bowel and bladder problems, too. Most babies with this form of the condition will also have hydrocephalus, an accumulation of cerebro-spinal fluid and problems with it draining. You can find out more about hydrocephalus on the Shine website at: www.shinecharity.org.uk.
2) Type two is known as Meningocele – this is the least common form of spina bifida. the sac contains spinal cord tissue and cerebro-spinal fluid. Surgery usually corrects the problem but some people still experience bladder and bowel issues.
• Spina bifida occulta (hidden form) – this is the mildest form and it is very common. Symptoms are rare, so most people with this form may not even know they have it, as the opening in the spine is so small that it is not visible to the naked eye. however, for about 1 in 1,000 people with spina bifida occulta, there can be issues. this tends to become apparent during adolescence when a rapid growth spurt can cause difficulties because part of the spine is tethered to the backbone. this can result in continence issues, scoliosis (curvature of the spine) and some reduced sensation in the legs.
Types of treatment
Treatment for spina bifida will depend upon its type and severity, which will vary from person to person. the following are the most common forms of treatment:
• Assistive Technology – mobility aids like wheelchairs and walking frames help children to improve their mobility and control of their symptoms.
• Occupational Therapy (OT) – if your child finds everyday tasks difficult, a therapist can identify solutions and help your child to develop skills to maximise their independence.
• Physiotherapy – helps people with spina bifida maximise their mobility and movement and builds strength in the leg muscles.
• Surgery – usually takes place about 48 hours after birth to repair the spine and put any exposed nerves or tissue back into the spinal column. Other surgery may be needed in the event your child has scoliosis or dislocated joints. If your child develops hydrocephalus, a tube called a shunt may be inserted to drain excess fluid to another part of the body.
• Treating incontinence – there are various interventions used to help children achieve greater bowel and urinary continence, including medication, dietary changes, catheterisation and surgery. Ask about
• Brooklands Park, Worthing – accessible playground with equipment opened by RADAR key and bike track for children with physical disabilities.
• Chailey Heritage Clinical Services – a range of services and therapies available to children with complex physical or neurological physical disabilities. tel: 01825 722112.
• Child Disability Service – a social work service for children and young people with severe and/or complex disabilities, it works with families and other agencies to ensure they get the right support. call: 01403 229888 or email: [email protected]. Please note that some children may be referred on to the MASh (see contact details below).
• Compass Card West Sussex – a free leisure discount card for 0 to 25 year olds with SeND, which is run by Amaze. Find out more at: www.amazebrighton.org.uk or by calling: 0300 123 9186.
• Independent Support – Amaze’s Independent Supporters provide advice and support to parent carers and young people applying for or transferring to an ehc Plan in Sussex. For Sussex Independent Support, call: 0300 123 7782.
• MASH – support from health and social care. If your child is under 18, call the MASh, tel: 01403 229888, email: [email protected]. For over 18s call the Adult Social carePoint: 01243 642121, or email: [email protected].
• Portage – a home-based educational programme tailored to a child’s individual needs. Available to very young children. chichester: 01243 536182, crawley: 01293 572480, horsham and Mid-Sussex: 01444 243150, Worthing: 01903 242558.
• SASBAH (Sussex Association for Spina Bifida and Hydrocephalus) – runs a number of services for children, adults and families including an advisory service, a family support and respite service and support groups that meet in Burgess hill, Bognor, crawley and Worthing. Tel: 01903 230782 or go to: www.sasbah.org.uk.
• Other resources – the Ashdown club, Worthing: 01903 528607; Kangaroos, haywards heath: 01444 459108; PAcSO, chichester: 01243 533353; Springboard Project, crawley: 01293 531963, horsham: 01403 218888.
Further reading and useful links
• Making Sense of it All – our handy parent/carer guide contains information and advice on benefits, support for your child at school, getting help from social services and accessing social and leisure activities – www.reachingfamilies.org.uk.
• Disability Living Allowance (DLA) – your child may qualify for DLA, a state benefit that will help with their care. For further information visit www.gov.uk/dla-disability-living-allowancebenefit/overview.
• Headway – an organisation that deals with brain injuries and conditions, its website has useful information about hydrocephalus. Go to: www.headway.org.uk
• Shine Charity – go to: www.shinecharity.org.uk.
• West Sussex Local Offer – go to https://westsussex.local-offer.org and search for ‘Spina bifida’.
- Spinal Muscular Atrophy Support UK: We offer free confidential information, emotional support, practical advice and guidance to anyone affected by Spinal Muscular Atrophy who is living in the UK. We also provide free information and support to health, education and social care professionals. Visit: www.smasupportuk.org.uk