Cerebral palsy: A set of neurological conditions without cure

Olaoluwa Gbadebo is seventeen years old. He is the last born of his parents. When he was young, Alaba Gbadebo, his mother and co-founder/director, Benola Initiative, noticed Olaoluwa cried throughout his first three months after birth. Alaba soon realised it was a cerebral cry and he would choke on virtually everything, be it breast milk, water, etc.

Though the Gbadebos resided in Kano State then, they were told Olaoluwa would get better but by the time he was six months old, he did not have neck control, he was sloppy and it was a struggle to make him eat. Alaba’s husband, Felix, was then in the Airforce and he later got posted to Lagos. Immediately they arrived Lagos Alaba contacted Seyi Roberts, a neurologist and family friend and he was the first to diagnose cerebral palsy.

“I did not want to believe the doctor’s report but in 2007, when he was 7 months old, we flew him to Germany and it was confirmed again. His case is one of the severe ones. He is totally dependent, he wears diapers, his food must be soft, he loves food, he is intelligent, he knows all of us but he has very few words.

“Three years ago, he had spinal cord surgery in India; the surgery lasted for eighteen hours. He has about forty-five bolts and three rods on his back that is why he can sit up a bit. He had scoliosis and it affected his spine hence the need for the surgery. Most children with CP have scoliosis.” Alaba revealed.

Alaba further adds that “He also has hip displaced and we did not do anything about that one because the pain will be too much. Medically, he is not going to be able to walk so why make him go through another level of pain? We concentrated on the spine because if that wasn’t done, the lungs will collapse and he would not be able to eat or breathe well. He has two nurses looking after him for 24 hours. When one nurse is closing another is taking over. There was a time we couldn’t afford it but we thank God for friends and family. It is a tough condition to manage but God is and has been faithful through it all,” Alaba concludes.

Cerebral palsy is a term which encompasses a set of neurological conditions that cause physical disability in human development – they affect the brain and nervous system. The word ‘cerebral’ refers to the area in the brain that is affected, while ‘palsy’ means complete or partial muscle paralysis, frequently accompanied by loss of sensation and uncontrollable body movements or tremors.

Cerebral means related to the brain or cerebrum. Cerebrum is a Latin word meaning “brain; top of the head, skull”. In the English language the cerebrum is the anterior (front) portion of the brain consisting of two hemispheres; it is the dominant part of the brain in humans. And that are attributed to non-progressive disturbances that occurred in developing fetal or infant brain. The incident in developed countries is approximately 2.25 per 5,000 births.

Cerebral palsy is the most common childhood physical disability. It is a permanent physical condition that affects the movement. It describes a group of disorders of the development of the movement and posture, causing activity limitation.

According to Alaba, “BENOLA is an amalgam of the names of two individuals who have had the most influence on our lives. ‘BEN’ is from our late father, Benjamin Olatunji Gbadebo, who taught us to fear God, respect man and live a sincere, honest and frugal life; and ‘OLA’ comes from our last son, Olaoluwa Gbadebo, who continues to show us the beauty and peace that comes with the acceptance of one’s fate. His remarkable inner-strength and tolerance for pain has also taught us the joy of living a life with limitations,” Alaba said.

Benola is a Not-for-Profit Organisation committed to change and progress for persons living with cerebral palsy. They strive for their inclusion into society in order to ensure that they and those who care for them live the best possible life under the peculiar circumstances in which they find themselves. The Initiative is focused on professionally networking families, friends, healthcare professionals, care givers and educators in order to keep them abreast of current trends and options available for better management of cerebral palsy.

“We achieve this objective through forward-thinking programmes like information and referral services, capacity building, advocacy, and research designed to help those living with Cerebral Palsy, find ways to better cope with their unique circumstances,” Felix Gbadebo, co-founder, Benola Initiative said.

In a media chat with Health Editors recently, Felix revealed that “On the 20th of July, there will be a national family forum. We will be inviting all the health experts and families with children that have CP. 70 families have contacted us already from all over Nigeria for registration. We can only accommodate 250 people at the designated place of the meeting, parents who are willing to be part of it should log on to www.benola.org for more information. At the family forum, Benola will be supplying families with drugs, diapers and more; we want to reach very poor families,” Felix reinstated.

Speaking more about the caring for a child with CP, Alaba says that “The medication for CP is expensive. Olaoluwa for instance, takes medication every three hours. He has a hole in the stomach covered with a peg and a pipe passes through that stomach so we pass his medication through the pipe and it is pegged. The area is always cleaned to avoid infection. After his surgery, we observed that he started refusing medication; he would vomit like half of it hence the alternative route to pass the medication inside him through the pipe.”

“We remove the peg after every three months. He eats through his mouth but takes medication through the pipe passed into his stomach. One good thing about Olaoluwa is that he is always happy because he is surrounded by love. He takes medications every three hours. Every month, it takes about 300,000 to cater for him. The diapers he uses are for adults, remember he is seventeen years old, sometimes I get the diapers in Lagos

sometimes we don’t so I get them from abroad…my son takes about 30 drugs in a day, the drugs are taken at intervals and are mashed and passed through the tube into his stomach. We understand all these challenges and that is why we will be doing our best to reach out to all the family that will attend the forum even as we trust God for sponsors,” Alaba concluded.

According to experts, “Most cases of cerebral palsy develop even before the child is born. Very rarely does it occur during childbirth, although if the baby is premature or is underweight and suffers from intraventricular haemorrhages, it can lead to development of this condition in him.

“But mostly this condition develops when the brain development of the unborn child is affected when the mother is alcoholic, smokes, takes drugs, is malnourished, is exposed to certain chemicals or suffers any mental of physical trauma when she is pregnant. Some other reasons for a child to develop cerebral palsy are any injury to the brain due to accident, asphyxia, bacterial infections such as encephalitis or exposure to certain chemical and allergies.”