Whenever, a child is diagnosed as having cerebral palsy, the idea which comes to our mind that he is suffering from permanent brain damage and will be permanently disabled for life. Until now, it was believed that in the absence of effective treatment these children can not do their daily activity on their own for whole life and they have to be dependent on others and it was also thought that their life expectancy will be short. Most of the time parents used to wander from pillar to post in the hope of best advice and treatment and clinicians are always in dilemma regarding unpredictable out come. But truth is far away from this belief.
These children can survive up-to the age of normal person with good quality of life if they are given good treatment by multimodal approach. It is also seen that quality of life & life expectancy depends more on ambulatory capability & other associated problems: so if child can be made ambulatory & their associated medical problems tackled in timely, their life expectancy can be improved a lot. Recently, due to new concept of SEMLS & OSSCS, most of our children with cerebral palsy can be given good quality of ambulatory life with little assistive devices so that they can be better mingled in society and their capabilities are utilized in a much better way.
Disability – Apart from physical disability child can have lot of other medical problems like, Convulsive disorders , Feeding problems, Mental retardation, Constipation, Visual defects, Dental defects, Hearing defects, Sensory defects, Sleeping disorders, Speech impairment, Poor immunity, Growth retardation, Obesity, Behavior problems, Malnourishment, Perceptual problems etc.
Life expectancy & Prognosis – Survival of children in cerebral palsy is lesser than normal population due to associated disabilities; not because of cerebral palsy itself. It has also been seen that child with ambulatory capability with or without any walking aids has more survival and good quality of life than child on wheel chair.
Severely affected quadriplegic children if not managed at early age, they are not going to survive more than 30 years, on the other hand partially affected Tri & Di Plegic children can survive up to life expectancy of normal population. Now with advancement in treatment modality, life span of quadriplegic children can also be prolonged. These persons can have job, live independently, marry have children & retire, and can be active, productive members of their communities. Approximately 85% of partially involved children have the potential to become independent ambulators.
Scenario in Developing Countries – in spite of increase in life expectancy of children with cerebral palsy in developed countries, children with cerebral palsy in developing countries still have poor prognosis because of ignorance and lesser facilities of advance modality of treatment & absence of standard treatment guideline. As a result the families are confused as to what is the best for their child & the child is afraid of going anywhere, and ultimately child remains disable for whole life.
Dr. Jitendra Kumar Jain is a famous name in the field of childhood physical disability pediatric orthopedic problems in North India. He has been an MS Orthopedics, DNB Orthopedics, Pediatric orthopedic surgeon & also a cerebral palsy specialist for over 21 years.