‘How I lived with my child with Cerebral Palsy’

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cerebral palsy

It isn’t easy raising and caring for a child with Cerebral Palsy (CP), but that doesn’t mean you are helpless. Mrs Clara Folake Lawal spoke with LARA ADEJORO on how she raised her daughter with CP, who is at the University of Pretoria, South Africa for her Ph.D.

Tokunbo was not the first child in the family of Mr and Mrs Lawal but they didn’t have any experience of dealing with disability and weren’t prepared for what lay ahead. “But being a nurse really helped me and I know that even if others try, they will also succeed,” Mrs Lawal said assuredly.

The beginning

Mrs Clara Lawal who is also a lecturer at Babcock University, Ilishan-Remo, Ogun State had her baby (Tokunbo) in 1981 in India and the doctors didn’t recognize that Tokunbo had any problem. “In fact, I was the one that was treated, they said I was an anxious mother. They were giving me drug but I knew something was wrong.

“My baby was not sucking well, she would sleep through out but I recognised something was wrong; even though the doctors and my husband didn’t recognize that. So, I had to come back to Nigeria where I know they will know that child has a problem and that was how we started.”

Mrs Lawal took up the courage of taking her daughter to LUTH to see a woman who does exercise for babies immediately they are born, according to her.

“Like mine, my child had asphyxia at birth. She didn’t breathe immediately she came out, she was completely blue because I was in labour and I didn’t shout so they didn’t know I was ready. They said they want to take me to another place, so as they were pushing me along, immediately we got there, my baby was ready to come out. So she must have breathed inside.”

Discovery
The woman at LUTH couldn’t take Tokunbo because she was already 11-months-old, “but I continued with what I know, which was exercise, and making sure that she eats. Luckily for me, I went for my grandmother’s funeral where I met Dr Mrs Odiakosa. She cares for children with special needs. She recognised my daughter and sent for me and that how was how the journey started, it was not an easy journey but I endured,” she said.

Continuing, Mrs Lawal said, “one Dr Mrs Majekodunmi took me to Lagos Island and we started physiotherapy for Tokunbo but the most important thing is that, it is something you have to do almost every 24 hour, you have to teach her how to crawl, smile, hold her hand up and that we continued everyday. We taught her how to do everything, it was not easy, and it’s labourious. After two years, she started walking,” she said with a smile.

Coping with the educational system

“She wasn’t doing well while in school. In fact, the principal said I should come and take her. The doctors said she wasn’t going to do well and advised having another child. She was my second child, I had 3 of them and she’s the second. I wanted to have only two children but I had the third child because of her. I prayed to God to give me another girl so she would look after her because boys don’t look after children and luckily, I had another girl and all of us together looked after her.”

Fortunately, one her teachers would ensure Tokunbo participated in everything every other student does, even though others gave up on her.

“The teacher took it as a personal responsibility to ensure that she did what every other person was doing and I thank God that she’s reading her Ph.D in South Africa. She went to secondary in Abeokuta, had her university education at Babcock and had her masters in Britain. She’s doing well, happily married and blessed with a baby girl.

“It was not an easy experience but when you love your child, you would do everything for that child and with determination, I knew she was going to be okay and I showed her love. I told her that, if they look at her, she should look at them back because when you see her you will know she has cerebral palsy. I was able to take care of myself and the child and my husband was supportive too in the ways he could.”

According to a Consultant Paediatrician and Dean, Faculty of Clinical Sciences at the University of Lagos, Professor Afolabi Lesi, a recent statistics indicate that 700, 000 children suffer from CP in Nigeria.

He said, between five and 10 children per 1, 000 as against the between two and four children per 1, 000 in the United States are sufferers.

Though, CP is classified into three spectrum: mild, moderate and severe, Lesi said, about 60 to 80 per cent of the cases in Nigeria would have seizures, intellectual disabilities and others.

Looking at the number of people who make a family in Nigeria, he noted that five people are often affected when a relation has cerebral palsy.

“So if 700, 000 people are affected, about 3.5 million people are directly affected including 1.4 million parents,” he said.

The exact causes of most cases of CP are unknown, but many are the result of problems during pregnancy in which the brain is either damaged or doesn’t develop normally. This can be due to infections, maternal health problems, a genetic disorder, or something else that interferes with normal brain development. Problems during labour and delivery can cause CP in some cases.

Premature babies — particularly those who weigh less than 3.3 pounds (1,510 grams) — have a higher risk of CP than babies that are carried full-term, as are other low birth weight babies and multiple births, such as twins and triplets.

Brain damage in infancy or early childhood can also lead to CP. A baby or toddler might suffer this damage because of lead poisoning, bacterial meningitis, malnutrition, being shaken as an infant or being in a car accident while not properly restrained.

A non-governmental organisation, Cerebral Palsy Center, Lagos, has called on the government to provide management centres for children with cerebral Palsy (CP).

Speaking at an organised event by the NGO to commemorate the World CP day, the founder of the Center, Nonye Nweke said, children with CP need treatment centres where they can be taken in order to have the appropriate therapy they should have.

“The government know these children are here and they count, so they need provide facilities for them. Most of them are not able to go to schools because there are no schools for them. They say there is a school for them in Lagos but the environment is not conducive.”

CP is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary between people. Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing and speaking.

Often babies with cerebral palsy do not roll over, sit, crawl, or walk as early as other children their age. Difficulty with the ability to think or reason and seizures each occurs in about one third of people with CP.

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