Cerebral Palsy (CP) is a silent affliction in some homes in Nigeria. Many families of children with CP primarily take steps to shield the disability and remain in silence. This is one of the reasons Mrs. Alaba Gbadebo,a mother of a nineteen-year-old with CP co-founded a non-governmental organisation known as Benola, a cerebral palsy initiative with her husband. During this year’s business luncheon with health editors, the lecturer turned to CP advocate spoke to CHIOMA UMEHA (HEALTH EDITOR) about the condition, Benola’s advocacy initiatives, among other things.
You are a co-founder of Benola, a cerebral Palsy initiative. What is cerebral palsy?
Cerebral palsy is actually brain damage in mostly children during or after delivery. This damage affects a child’s ability to control its muscles. Most times not all the brain is damaged. If a child with cerebral palsy can talk, then that part of the brain is not damaged. But you might notice something about the posture and movement. The brain cannot tell the hand to move when it is supposed to move because that part of the brain that does so has been damaged. A lot of children with cerebral palsy are highly intelligent. Sometimes, the condition does not affect the intelligence quotient of the child, but the movement and posture. A lot of them are stiff and floppy. Most of them are on the wheel chair because they cannot walk.
Does this suggest that cerebral palsy affects children differently?
Yes. There are different forms of cerebral palsy. It is possible to say no case is all together the same. Cerebral palsy may affect one side of the brain; it might affect the two sides of the brain. The function of that part of the brain is impaired. That is why people living with cerebral palsy have different deformities, some cannot walk, hear or speak, while for others it is coordination in movement and reasoning. Some children with cerebral palsy are able to go to talk, walk and even study, but some can’t do any of these. My son has total cerebral palsy. He can’t walk, talk, and, of course, go to school. He is always in a wheelchair. None of the limbs is working. If you tell my son to point to his nose, he will point to his nose to show you he knows what you said, but it will take him two minutes to get his finger to get to his nose. We then realised that the intelligent part of his brain is working. So, cerebral palsy can be typified based on the area of brain damaged. There are severe cases and mild cases of cerebral palsy. We have seen master and Ph.D. holders with cerebral palsy.
A lot of people hide this kind of disability. Why did you break the silence with your son’s case?
Maybe it is the kind of person I am. If you love me, you have to love my boy. I don’t believe in hiding anything. I have never hidden by son from day one. Once you meet me the next three minutes you will hear about Olaoluwa. I will tell you about him so that you are not shocked when you see him. I don’t hide him. That is why it was easy for us, two years ago, to come out. Of course, we realised that you have to encourage people. And in this part of the world, the stigma is so bad. Some people kill their children; some lock them in rooms. Meanwhile, these children are celebrities abroad. If a child has a disability abroad, the government takes care of the child.
You are paid as a primary care provider who takes care of that child for the government. Their health care services are free. You have disability friendly hotels, parks, banks, airports, schools, Churches etc. The government makes sure that public places are disability friendly. They make sure that people in wheelchairs are able to access facilities. We want to create such awareness in Nigeria. So that the Nigerian government through the National Assembly can pass a law not to disenfranchise people with disability; that every building that will be built in Nigeria be disability friendly. This is part of our advocacy. We are just starting. It has been two years and we know we will get there.
We believe that there will be a time in Nigeria’s history when a bill will be passed ensuring that every single structure built in Nigeria will be disability friendly. It will be done so that disabled people can go to Church. Right now, they cannot go anywhere. The buses are not built to put wheelchairs. In advanced countries, buses have rams that enable people in wheelchairs to enter buses. But here they can’t go anywhere. We don’t even have wheelchairs to give them in the first place. So, a lot of things have to be done for people with disability.
How many years have you been nursing your child?
Olaoluwa is nineteen. June 14 was his nineteenth birthday. And it’s been nineteen years for me. And I wouldn’t tell you it has been easy, but because I am a Christian, I do not believe that God made a mistake of giving me a child like him. He is aware of the situation. He gives me grace. I take one day at a time. I cannot do more than that. At the end of each, we thank God and when a new day begins we pray for grace.
Basically what is Benola about?
Benola is about creating awareness about cerebral palsy. We run an advocacy centre in Lagos where we make referral services and provide medical advice on how to manage cerebral palsy. A lot of people in Nigeria do not know much about cerebral palsy. Autism and Down syndrome are now popular. Cerebral palsy has not been given any attention in Nigeria. We realised that a lot of people do not know about cerebral palsy. Yet there are many homes with children who have cerebral palsy. Cerebral palsy is the most expensive disability to manage in the world today.
A child with cerebral palsy needs a lot of medical professionals to manage him or her. A child with cerebral palsy might be born deaf, blind or lame or all of them. He will need a neurologist, a psychologist, a nutritionist, an ophthalmologist, a dentist and a physiotherapist. The child with cerebral palsy has to have physio all the time even as an adult because it affects movement and posture. A lot of them cannot walk. You need to stretch them continually to release stiff areas.
What are the causes of Cerebral Palsy?
A number of things can cause brain damage. Primarily cerebral palsy is caused when oxygen does not get to the brain at the early hours of delivery. When oxygen does not get to the brain early after a child is born it can damage any part of the brain. That is why children must be made to cry immediately after delivery. Another cause of cerebral palsy is complication during delivery. It can also be caused as a reaction to a kind of medication during pregnancy. As a pregnant woman only take drugs at your doctor’s prescription. Certain drugs can damage the system of your unborn child. Also, when a child falls down at an early stage of birth it can damage the brain.
The head of a child within weeks and two months of delivery is very tender. Any contact with the hard ground can cause brain damage. Any of these things can cause cerebral palsy. Whichever is the case, it is not proper to hide this child. We want Nigerians to come out so that this disability can receives the proper attention it deserves. There are so many rich people whose children have cerebral palsy and they are hiding them abroad. We cannot hide them forever. Some of them are very intelligent. Some can be managed so that these children can have a life of their own.
What is Benola doing to help manage cerebral palsy?
Benola is taking a different approach. We are planning to have a cerebral palsy centre at strategic locations in Nigeria. We are starting from Abuja and then Lagos, Port Harcourt and Kano. We already have secured a land space to commerce the construction of Benola cerebral palsy centre in Abuja. These centres will serve as rallying point for people whose children have cerebral palsy. People could go to these centres for advice on how to manage cerebral palsy.
We will also provide referral services for medical hospitals around the world with proven speciality on cerebral palsy. I believe we have to start somewhere. We need partners for this project. We are calling on Nigerians and corporate bodies to help heighten the awareness on cerebral palsy. We need people who will lead advocacy groups to universities and communities. We need people who will partner us with to remove the stigma on all kinds of disabilities.
Is there a cure for cerebral palsy?
There is no cure yet. We however have a system of management therapy that a child with cerebral palsy can undertake to get better. Like I said, cerebral palsy is the most expensive disability to manage. There are medications that helps with seizures and stiffness of movement.
This story was published in Newswatch Times on June 25, 2015.