Spina bifida Spina bifida

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Dr Carolyn West
Head, Spina Bifida Unit
The Children’s Hospital at Westmead
NSW Australia

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DET websites

Resources

  • Spina Bifida Clinics
    The Children’s Hospital at Westmead
    Ph: +61 2 9845 2769 or +61 2 9845 2827

  • Outpatients Department
    Sydney Children’s Hospital, Randwick
    Ph: +61 2 9382 2222

  • Department of Paediatrics
    John Hunter Hospital, Newcastle NSW
    Ph: +61 2 4921 3000

  • Super Strategies for Successful Students (DVD)
    Kids Health, The Children’s Hospital at Westmead,
    Locked Bag 4001, Westmead NSW 2145

  • Hydrocephalus – A Guide for Families (DVD and booklet)
    The Madeline Foundation
    PO Box 1010, Neutral Bay NSW 2089 or
    Kids Health, The Children’s Hospital at Westmead,
    Locked Bag 4001, Westmead NSW 2145

  • Hydration and Sport. Australian Institute of Sport

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What is spina bifida?

Spina bifida is the most common congenital abnormality involving the development of the brain and spinal cord, occurring in one in 1000 pregnancies. Children born with this condition may have weakness of the legs and problems with control of bladder and bowel.

In the early weeks of pregnancy the sheet of cells destined to become the brain and spinal cord form into a tubular structure that fuses posteriorly. Failure of completion of posterior fusion results in incomplete development of the spinal cord and bones known as spina bifida or myelomeningocoele. The failure of posterior fusion can occur anywhere along the spine but is most common at the lower end of the spine, therefore affecting the control of the legs, bladder and bowel.

  • Severity of spina bifida will depend on the disruption to the development of the spinal cord.

  • A child with extensive disruption is likely to be paraplegic, ie the nerves to the legs do not work. Such children will require extensive orthoses (splints) to achieve walking, and a wheelchair for longer distances.

  • A child with minimal disruption to the development of the spinal cord may have some weakness in the legs and require orthoses and crutches for walking, but will be able to walk around the classroom and the playground with this equipment.

  • A few children with spina bifida will not have any noticeable impairment of function.

Although spina bifida is not a progressive or degenerative condition, significant changes do occur during childhood because of growth and development. These changes are both physical and cognitive, with the two interacting.

Hydrocephalus also occurs in 90% of children with spina bifida. (See the Hydrocephalus article.) This is where cerebro-spinal fluid builds up within the brain because it cannot adequately circulate.

After the baby is born, hydrocephalus is commonly treated with a shunt which is a fine plastic tube which usually redirects fluid from the brain to another part of body, usually the abdominal cavity.

If a child with spina bifida requires a shunt in the neonatal period, it is usually required for life.

Symptoms of a blocked shunt:

  • most commonly headache that persists and increases over 24 to 48 hours, with little improvement with Panadol or Nurofen.

  • often lethargy, dizziness, vomiting and blurred vision.

If a student with spina bifida has these symptoms or a headache at school, the parent/carer should be contacted.

Participation in sport and physical activities should be encouraged. Shunt function rarely, if ever, is affected by a bump on the head or a fall as part of everyday physical activities

Children with spina bifida and hydrocephalus frequently have some cognitive impairment. Measurement of their basic IQ is insufficient to assess their cognitive skills.

A neuropsychological assessment will be more helpful in understanding the individual learning needs. The IQ often falls within the average range, albeit at the lower end of the average range, with a small percentage falling in the mildly intellectually disabled range.

Hydrocephalus also has a significant effect on executive functioning, which becomes increasingly important as the child grows older and these functions develop. Common deficits in executive functioning include:

  • difficulties with organising and planning

  • problem-solving,

  • goal-oriented behaviour

  • motivation and drive, and

  • mental flexibility.

Impairment of cognitive skills and executive function means that students may need extra help and support with:

  • schoolwork

  • in developing skills and working towards independence

  • and with developing skills for employment and

  • developing relationships.

The child with spina bifida at school

There are three main areas of functional impairment in children with spina bifida:

Many students with spina bifida will have some impairment of walking and limitations in other physical tasks and may require support classes such as:

  • orthoses (splints)

  • a walking frame or crutches

  • a wheelchair.

The majority of students with spina bifida will have incontinence, ie they will not know when their bladder or bowel needs to be emptied See the ‘Toileting’ tab under ‘Implications for schools’ in this topic.

Cognitive issues are found in the form of:

  • Attention difficulties

  • Problem-solving and learning strategies.

download icon Download: Teaching strategies (.pdf 68kB) to learn more.