In this report, Odimegwu Onwumere writes that some households can no longer take absolute care of their children living with cerebral palsy or stigmas associated with the condition
Air Vice-Marshall Femi Gbadebo (Rtd) has a 20-year-old son who is suffering from cerebral palsy (CP). “Having managed my son’s condition for quite some time and travelled extensively around the world, I came to the conclusion that something is fundamentally wrong with the way disability is being managed in Nigeria,” Gbadebo said. Whereas there were speculations by Nigerians of families doing away with their CP children, the love for his son moved Gbadebo and his Benola Cerebral Palsy Initiative recently, for a walk in Lagos to sensitise families about CP.
“Despite the fact that cerebral palsy is also prevalent in children, it is sad to note that there is no specific date dedicated to mark the event by the World Health Organisation (WHO),” he said.
Gbadebo harangued that about 17 million people are passing through CP around the world. It is believed that where there is a CP patient, the household is affected, especially in Nigeria where the healthcare is unsatisfactory. Specialists define CP as a physical disability that affects movement and posture.
“Asphyxia is a situation whereby a child is delivered and is unable to initiate spontaneous breathing. Unexpected events in the womb and unexpected events at the time of delivery could also lead to the malformation of the brain,” said Dr. Denis Shatima, Paediatric Neurologist, Abuja.
For Mrs. Joan Obieke, Assistant Director, Physiotherapy Department, National Hospital, Abuja, “This commonly attacks children and young adults in the most productive years of their lives, frequently leading to unemployment. This complicates the problems of the afflicted and the family that relies on their financial support.’’
Checks revealed that when some of the households can no longer bear the pains of taking absolute care of the child or stigmas associated with the condition, they do away with the child.
Speaking while fielding questions to journalists on the issue in Abuja, early this month, Mrs. Kawan Aondofa Anjira, the Founder of SEEDOO Initiative, a group that sees to children with special needs, said, “Children born with cerebral palsy (CP) are killed every day in Nigeria, whereas they should deserve a right to survive.”
Consultant paeditrician, Prof Afolabi Lesi was worried that no fewer than 700,000 children had cerebral palsy in Nigeria, while speaking at the maiden National Cerebral Palsy (CP) family forum organised by a CP initiative, Benola, Lesi, Dean of Clinical Sciences at the University of Lagos (UNILAG), 2013.
“60 to 80 per cent of such children would have co-morbidities such as seizures and intellectual disabilities, among others,” said Lesi.
It’s noted that the successive Nigerian governments have not slept on their oars while children with the CP deformity perish; but the governments have not done much.
A state like Lagos early 2013 showed unwavering interest to have cerebral palsy centre in Lagos. Investigation showed that supportive therapies such as physiotherapy and speech therapy for CP children are challenging with dearth of therapists in the country and government has been lukewarm to subsidise cost for the appellation of parents.
Against this backdrop, many people still believe that CP has something to do with impure spirits, hence they refuse to take care of CP children.
“This is because many people do not go to the hospital, where they could be told what exactly is wrong with a CP child and how the child could be attended to,” said Anjira.
The walk organised by the Benola Cerebral Palsy Initiative to sensitise the masses in Lagos, said that people need appropriate education and wakefulness of neuro-medical deformities.
Arguing that the mindset of Nigerians must change if cerebral palsy would be ultimately defeated, Gbadebo said, “We need to get the Federal Government and the private sector involved in this fight. I believe that it is ignorance that gives rise to the fear and stigma associated with disabilities in this country.
“We came up with a decision to do something different by educating the public and embarking on capacity building, especially for those involved in the care and management of disabilities. Last year, we had about 500 participants at the inaugural walk. This year, our target was 1000.”
Although, the experts warn that meals for such children should be designed with the help of a dietician; without this, wrong diets may be given to such children or make them malnourished. A leading voice on CP treatment said, “Home based mortality and rehabilitation services should be provided by physiotherapists and caregivers.
“Recreational activities can be provided at home usually in conjunction with the siblings and other children. Modification of the home in order to soothe the daily life and easy movement of a child with cerebral palsy is very important. Modification of vehicle for easy transportation may also be necessary.”
In a public presentation, those in this line of thought blamed the government of not helping much to halt the prospectively preventable conditions. Ovie Ebireri, a journalist, revealed the views of the experts.
He said, “There is very little government and community support for families living with cerebral palsy. These families usually bear the burden alone. Facilities for treatment and rehabilitation of children with cerebral palsy are lacking or inadequate. The manpower gap is enormous. There is no national policy framework and no roadmap for treating cerebral palsy in Nigeria.”
They believed that if “primary healthcare centres should be equipped with trained manpower and instruments necessary for efficient functioning of maternal, newborn and child care. For those already affected by cerebral palsy, emphasis should be on intensive rehabilitation, care and support services.
There is another suggestion, “Healthcare services should include treatment of minor or recurring. Day care services for minor procedures can also be done at home. Meals should be planned by a dietician in order to prevent malnutrition or obesity. Home based mortality and rehabilitation services should be provided by physiotherapists and caregivers.”
Consequently, medical experts warned pregnant women to be cautious of what they eat or give their children before they get to five years old because drugs, infections, stress, nutrition and many others are contributory factors that affect the wellbeing of the child. Evidence shows that things taken during pregnancy or before a child attains five years old most times affect the child in a negative way.
There is a clarion call that the provision of health insurance and financial support and nutritional support would go a long way to assist CP children. Those in this line of thought, said, “Government should develop rehabilitation services that are equipped with modern devices and instruments for proper rehabilitation. Government should plan for training and restraining of personnel involved in the multidisciplinary care of children with cerebral palsy.
“Government should fund research programmes in the field of cerebral palsy. Government should formulate policies that will assist and protect people living with disabilities, pass legislation that will ban the use of derisory words on people with disabilities as well as enact laws to ensure freedom of movement and social interaction of disabled persons within the community.”
The World Health Organisation (WHO), recommended, “Improvement in mental health services doesn’t require sophisticated and expensive technologies. What is required is increasing the capacity of the primary healthcare system for delivery of an integrated package of care.’