A 38-year-old mother of three, Mrs Abiodun Olaniyi, tells TEMITOPE ADETUNJI, how her son’s battle with cerebral palsy and her inability to fund his treatment has affected her family
How many children do you have and what is the name of the affected child?
My name is Mrs Abiodun Olaniyi. I am 38 years old and from Ilesha, Osun State. I live in Ibadan, Oyo State, currently. I am blessed with four children. Emmanuel Olaniyi is the affected child, and he is my second child.
When did you notice that something was wrong with your son’s health?
When I gave birth to him, the hospital where I delivered him didn’t do the normal jaundice test which is an essential test for babies, and I wasn’t aware he has jaundice. I was only discharged from the hospital after giving birth to him. After being discharged from the hospital, I brought the baby home and we discovered his eyeballs had turned yellow two days after.
What did you do when you sensed that?
We took him to the hospital and we were told he was supposed to be kept in the incubator, but the hospital said they didn’t have an incubator. So, we kept on going from one hospital to another.
At the end of the day, we got to a hospital where he was accepted. We were told they would do a blood transfusion for him. So, my husband and I agreed to go ahead with the blood transfusion, which cost us about N280,000.
We also discovered his neck wasn’t straight by the time he clocked five months. When we discovered that his neck wasn’t straight, and we felt it wasn’t normal, we took him to University College Hospital in Ibadan, Oyo State. They told us at UCH that he had spasticity, and cerebral palsy and that the jaundice he had as a baby had done permanent damage to his body and affected one side of his brain.
Did the doctors recommend any treatment?
They recommended physiotherapy for us and we started doing physiotherapy when he was five months old. We did different types of tests: brain tests, ear tests, and lung tests and it cost us so much. He is six years old now, so it’s been six years since we started battling the illness. We’ve been trying hard since it started. My husband is not a lazy man; he has been trying his best to take care of him. I have been supporting him as well in my way, with no help from anyone.
We even got private nurses that come to treat him in the house. They normally collect N4,000 per hour from us, and we normally run this two times a week. Sometimes, we paid N10,000, N20,000 monthly for four years. We’ve been doing this for years and it threw us into debt at times. We have no savings. We’ve spent almost everything we have so that he can be well.
We buy drugs worth N30,000 every month. There are foods that he can’t take because of his condition. So his food is usually different from ours. His condition has made us very sad because we had to spend all the money we had on him.
In what other ways has the condition affected your son physically and mentally?
He can neither walk nor talk. We’ve been advised by doctors to look for money and take care of him. Emmanuel is a child that we love and we didn’t treat him differently from other children. He always cries in pain every day.
Did the doctors tell you whether your son has a chance of walking?
They said he had a 100 per cent tendency to walk again. They said his condition was still at an early stage. They told us to look for money so that he could be treated properly before the condition gets worse. The hope they gave us made us have faith that he will walk again and be fine and that is why we have been trying the little we can even though we aren’t capable.
Is the physiotherapy still on?
We stopped physiotherapy two years ago because we couldn’t afford the bills anymore, including the drugs. His condition has worsened so much that he can’t sit, walk or move his body. He has an abnormal muscle tone. Some of his body parts are too floppy while some are too stiff, and some of his bones have shifted from the normal position and he can’t talk.
So, in November (2022), we tried reaching out to one of the people in charge of physiotherapy and they told us to do something about it because he had a 70 per cent chance of walking.
How did that make you feel?
This is one of the things that make me cry whenever I think about what they told us concerning his condition. We’ve spent a lot of money on him to the extent that we no longer pay his siblings’ school fees so that we can take care of him with the little we have.
What do you do for a living?
I used to be a fashion designer but when his sickness started, I had to sell all my equipment. Now, I have not been able to work for four years after selling my equipment so that I can take care of him.
What is your husband’s occupation?
My husband is a dry cleaner, but as of last year (2022) when our financial situation started getting worse, I had to start selling little foodstuffs in front of our house, I begged for the space though.
We didn’t get maximum support from our family members in terms of finance, though some of them give us as low as N1,000, or N2,000 to buy him provisions in six months. I want to see my son walk again and be well. I am currently living a boring life because I am not happy.
How did his condition affect your well-being?
There was a time I did family planning when I didn’t want to have more kids because my son’s condition is worrisome but a doctor advised my husband to encourage me to have one or two more children so that when he sees a younger one, his health would improve and he would be happy. That was why I gave birth to two other children after him.
Drinking alcohol and smoking are said to be some of the habits among pregnant women that could put their babies at risk of cerebral palsy. Were you engaged in such habits when you were pregnant with him?
Not at all. I have never tasted alcohol in my life. I don’t know what it tastes like. I am a Christian woman and I don’t think alcohol is a good thing, especially for women.
Do people in your neighbourhood mock you because of your son’s condition?
Yes, people do mock my son and me. They call us all sorts of names. As a matter of fact, some describe me as a woman who has a son that is physically challenged. There was a day I wanted to take my son to the hospital for physiotherapy. I was downstairs, and I heard my neighbours who were upstairs laughing and talking about me disrespectfully. They didn’t know I heard them and that incident made me cry. People mock me and my family but it doesn’t stop me from taking my son wherever I go.
Did anyone advise you against keeping your sick child?
Yes. A few people asked me to leave my child but the shocking one that I can’t forget is that of a friend of mine based in Canada. She used to accompany me to the hospital when my son’s health issues started, but she later left for Canada. One day, she called me and advised me to find something to do about my son. I asked her to explain what she meant and she said I should poison my son to avoid mockery and embarrassment from people, adding that children like that (my son) would put their parents into life-claiming debts. Because of her statement, we stopped talking. Instead of helping me, she advised me to get rid of my son.
What did your family advise you to do?
My mum advised me to bring him to the village at Ilesa, Osun State, but I felt he might not get the necessary care. I felt he might be locked up in a room.
When your friend advised you to get rid of your son, how did you feel?
It drove me into depression. I was sad and I cried because I am a very emotional woman.
How supportive has your husband been?
God blessed me with my husband because he is always there to encourage me. He always tells me our son will walk. His encouragement has been a relief for me. My husband is very caring and he is a good man. It is so unfortunate we aren’t capable of helping our son out of this situation.
I will be excited if my son becomes well. I want to see my son walk, and if this is achievable through the help of Nigerians, I will be the happiest woman on earth.
What do you think he needs at the moment?
We need help to get physiotherapy, and speech therapy done including the availability of the machines for exercises that will make him recover quickly. I want to be a happy woman again; his issue has been giving me sleepless nights and I always cry.
How much did doctors say it will cost to give your son the necessary treatment?
Doctors told us that it would cost about N1m to give him the necessary treatment and he would walk again. I don’t want to hide my son anymore.