Article published 11th June 2008
Spina bifida meaning split spine, occurs very early in pregnancy.
The neural tube, which should develop to form the spinal cord, brain and spine, is split and one or more vertebrae fail to form properly. A gap appears, the bones do not close round the spinal cord and the nerves may bulge out on the unborn baby’s back and become damaged. About 80 per cent of people with spina bifida have hydrocephalus.
Helping the child with spina bifida/hydrocephalus in school
Strategies and help for children will vary according to individual need and should be pertinent to the child.
However, some general implications include:
- Safety: if a child is hit on the head or abdomen and doesn't recover quickly, damage to the shunt should be considered and help sought.
- Get the child's attention. Children may be easily distracted, have difficulty staying on task or have poor short-term memory. Say the child’s name so that they are aware the instruction is meant for them, gain eye contact and repeat instructions as necessary.
- Break down tasks and limit the number of instructions given.
- Provide visual prompts. Visual clues and timetables may help, as will routine and good organisation, both personal and at school.
- Reinforce and revise tasks. Progress may be inconsistent so be prepared to reinforce, and practise tasks. Children may find it difficult to apply skills learned so these will probably need to be reinforced in a variety of situations.
- Engage in activities that help coordination and mobility. Difficulties with dexterity or co-ordination may be the result of poor visual perception or a lack of fine motor skills. Some children have balance difficulties. They may need extra time and space to get around. Motor skills can be improved with the use of activities designed to improve co-ordination, develop grip, manipulation, strength and dexterity.
The physio or occupational therapist may work closely with the child to develop and encourage co-ordination. Special equipment isn't necessarily needed: multi-link cubes, plasticine, play-dough all can play a part.
Children with spina bifida are not necessarily all wheelchair users. Those with some paralysis below the damaged area of the spine may be able to walk, but have bowel and bladder control problems.
Some preschool establishments are reluctant to take children still in nappies, they must be careful not to discriminate when incontinence is the result of a disability. All schools now have to take note of the Disability Discrimination Act. Parents, too, need that extra support.
Some children may exhibit behavioural difficulties. As with all children, clear boundaries and a safe, caring environment with routine and structure will help.
Forewarn and prepare children, especially young children, of anticipated changes to routine, even exciting ones such as a school trip, a special visitor, or a new activity.
Some children don't like noise or over-excitement; others may have difficulty relating to their peers, preferring adult company. Adults can help support a child by building up a good relationship and helping them move towards independence, becoming less reliant on adult assistance and support as confidence and esteem develop.
Types of Spina bifida
Spina bifida occulta
This condition is usually very mild and without symptoms although occasionally there may be continence problems and difficulties with mobility.
Spina bifida cystica
Takes two forms: a meningocele and a myelomeningocele. In a meningocele the nerves are not normally badly damaged and there is little or no malfunction, the more common form is Myelomeningocele typically this is more severe as the sac includes nerves and part of the spinal cord as well as tissue and cerebral-spinal fluid. Some degree of paralysis and loss of sensation occurs below the site of the defect. The extent of the disability is dependent upon the extent of nerve damage.
Cranium bifida is a failure of development of the bones of the skull. In this form the sac is called an encephalocele. In some cases part of the brain is also enclosed in the sac while in others it contains only tissue and cerebro-spinal fluid. Spina bifida has some genetic predisposition. For an affected person the risk of an affected child is 1 in 25.
Hydrocephalus can result when either (rarely) too much ‘water’ is cerebrospinal fluid (CSF) is produced, or more commonly when it is prevented from circulating or being re-absorbed. As a result, the CSF is produced, but cannot get out; this causes raised pressure inside the brain, the ventricles swell and the brain tissue is stretched and squashed.
The skull bones in babies and young children are not fixed together as they are in later life, and the pressure causes the head to increase in size. However, it is important to realise that hydrocephalus can also arise in older children and in adults, when the skull bones are fixed and the head cannot increase in size.