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.
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%)
CIC
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.
Spina bifida 6 – prognosis
Tags: 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:
For school-aged children:
In the classroom:
Survival of patients with spina bifida
One third die before 5 years of age
One quarter die before 40 years of age from:
If there is a thoracic level spinal lesion – only 17% survive to age 40 years.
47% die due to potentially reversible causes:
CIC
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.
About Lydia Garside
Lydia Garside is a general paediatrician based at Sydney Children's Hospital