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Spina bifida – prognosis


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This series is covering all you need to know about spina bifida. In the previous posts we looked at issues around diagnosis and antenatal counselling. This week, we look at the prognosis for patients with spina bifida.

Executive functioning is always affected in patients with hydrocephalus even when shunting is not required. Specific deficits and extent of deficits varies from patient to patient.

Executive functioning is organising and planning, problem solving, motivation, and multiskilling. It is the last learning skill to develop, and the first to be lost.

How can we help with learning?

For preschool children:

  • They should be encouraged to develop age appropriate skills – facilitate rather than “do”
  • Encourage thinking by extending sentences e.g. ‘What happened next?
  • Enable simple choices
  • Preschool is excellent preparation for school – should be strongly recommended

For school-aged children:

  • Structured day, regular routines
  • Didactic teaching, lots of repetition, revision
  • Concrete reinforcement
  • Prepare for the day
  • Anticipate change
  • May need to assist with socialisation

In the classroom:

  • Structured learning
  • Reduce stimulus/business of classroom
  • Reduce distractions
  • Simplify the tasks into steps
  • Make sure child understands the task
  • May need help to begin, organise the task
  • Memory – need to store information in an organised fashion

Survival of patients with spina bifida

One third die before 5 years of age

One quarter die before 40 years of age from:

  •   Epilepsy
  •   Pulmonary embolus
  •   Acute hydrocephalus
  •   Acute renal sepsis

If there is a thoracic level spinal lesion – only 17% survive to age 40 years.

47% die due to potentially reversible causes:

  • Renal failure – this is preventable as UTI – 7.2% (normal population 0.5%)
  • Osteomyelitis and skin breakdown
  • Pneumonia
  • Pressure ulcers
  • Hypertension

Children with spina bifida have complex needs and will need to see several different specialists regularly throughout their lives. Medical surveillance is key. Education is also imperative, initially for parents and then later as the child grows so they can self-manage as adults. Given the complex care, children are best served in specialist rehabilitation spina bifida clinics with immediate access to  allied health and different medical and surgical specialities as required.

Spina bifida is a life-long condition and how we treat children with spina bifida will have a huge impact on their adult health.

You can check out the rest of the series here:-

About the authors

  • Lydia Garside is a general paediatrician based at Sydney Children's Hospital


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