Spina bifida is one of the most common congenital disabilities, affecting approximately one in 500 births.

Improved treatment since the 1980s has meant that more children with spina bifida are surviving. These children are often of average intelligence and need to be able to attend a mainstream school.

Spina bifida is an abnormality of the spinal cord where one or two of the vertebrae do not form properly, thus causing a split, which in turn causes damage to the central nervous system. Most children with spina bifida will need to be in a wheelchair and may need a specially adapted toilet seat or other adaptations.

About 80 per cent of babies born with spina bifida also have hydrocephalus (an accumulation of cerebro-spinal fluid). As with other complex conditions, there are degrees of severity and there are several different types. Spina bifida occulta is a very mild form.

Key characteristics

A child with spina bifida may have:

  • some incontinence problems in the early years, though these are usually under control by the age of seven
  • weakness or paralysis in the lower limbs and need regular physiotherapy
  • a lack of skin sensation in some parts of their body as a result of nerve damage
  • difficulty sitting still and often appear fidgety and restless

A child with spina bifida who also has hydrocephalus have:

  • poor verbal comprehension
  • difficulty understanding some non-verbal cues eg. gestures, tone of voice
  • long-term visual and auditory memory difficulties
  • problems with eye-hand coordination and motor planning
  • great difficulty organising themselves and their belongings
  • some specific learning difficulties
  • difficulty in sustaining attention to a task.

Support strategies

You may need to:

  • have regular meetings with parents and professionals as the child’s needs may change over time
  • organise physical access to different parts of the school – particularly toilet and washing facilities
  • encourage children to take an active part in playground games as there are many games that do not require a high level of running and jumping
  • ensure that appropriately trained adult support is provided
  • make use of ICT as an aid to learning and encourage the development of word-processing skills
  • make use of audio-visual aids
  • ensure that extra time is given for specific tasks
  • celebrate ability, not disability as some children may be very able in a specific area
  • provide clearly structured classroom routines to help the child with developing their own organisational skills
  • use pictorial or colour-coded task lists to support independent planning and organisation of tasks
  • break instructions into chunks and check for understanding by asking the child to repeat each part
  • give opportunities for revision of key concepts and vocabulary
  • reinforce new concepts through practical activities related to the child’s own experiences
  • use circletime to encourage social interaction and communication skills
  • use specific games and activities to develop social communication skills.

Support agencies

Association for Spina Bifida and Hydrocephalus (ASBAH)