Struggle between child’s survival and coping with stigmatisation

In this report, AKINWALE ABOLUWADE writes on cerebral palsy, a condition that affects the control of muscles in the limbs as a result of complication arising at birth as well as the stigma and challenges that come with it.

Oluwatamilore Lawal is five years old but, like a baby, she is yet to stand to her feet to walk and has not gained the control of her neck since birth. Although she does not have the ability to stand up to do things by herself without anybody’s support due to her health condition; she is outstanding among her peers intellectually. According to her medical record, Oluwatamilore is down with cerebral palsy, an inability to control the muscles of her hands and legs. This, the doctor said, was due to a brain damage that occurred as a result of complications arising during delivery.

While relaying her experience to Saturday Tribune, her mother, Miss Aderonke Malik said she fell into prolonged labour during her baby’s birth. She explained: “I delivered her prematurely and the doctor said that the stress was responsible for the damage that affected her ability to control parts of her body, especially the limbs”.

For Miss Malik, the agony being experienced as a mother is being compounded by the stigma that she and her daughter face on a daily basis. According to her, people sometimes abuse her daughter and call her unprintable names because of her health challenge. She said that she always feels sad that many people see the girl as an object of pity rather than show her love and support.

She stressed: “She was born as a premature baby after a prolonged labour at the hospital. At the time when she was growing, we discovered that she could not sit down properly. She was taken to the hospital and we were told that she has cerebral palsy (inability to move part of the body as a result of muscular weakness). Now, she is five years old; she can talk but she cannot control her head well and she cannot walk”.

Oluwatamilore attends Royal Jasper Nursery and Primary School, Orogun, Ibadan. While speaking on her performance at school, she said: “My baby is very friendly. She has made many friends and she has made me have so many friends. Most people are closer to me today by virtue of their relationship with my daughter. Before I know it, she would have greeted them and they would exchange pleasantries. Some people don’t even notice her challenges because of her cheerful nature. It is when they ask her to come that she would tell them don’t you know I can’t walk? But she goes to school and she is very brilliant and I thank God for that. She is in nursery 2. Though she can’t use her hands, she is very good in verbal activities.

On many occasions however, her mother said her experience with people on the account of Oluwatamilore’s health were disturbing. She explained that she had to change her daughter’s school at different times as a result of rejection by her former schools. Miss Malik said: “We had changed her school on several occasions. Some schools are in the habit of rejecting children in this category because some parents would say they don’t want their children to mix with pupils with special needs. Some schools would just neglect such children in poor condition but the school she attends now is better, just that I pay higher fees there and it is not really convenient for me.

Asked how she has been raising Oluwatamilore as a single parent, she said: “It is very difficult socially, emotionally, physically and financially. On the financial needs, I can say that it is just God. One needs to keep strong and remain determined in order to be able to raise a child with special needs. Many people would embarrass you but you have to keep strong. So as to build confidence in her, I told her repeatedly that she is very beautiful. She believes it, so if anyone tells her that she is beautiful she would not be surprised but would simply say I know”.

Despite her resolve to keep strong and give Oluwatamilore the best that she can as a mother without minding people’s attitude she said she sometimes feels bad and shocked about the uncomplimentary remarks and behaviours that they put up with her child. She said: “The society can be very discouraging. Some believe that what is happening to her is as a result of spiritual attack; some people tell me sometimes that my daughter looks like a snake. Such a remark can be shocking and heartless. That is what we face from time to time. People would bring different herbs and ask me to use for her.

“There was a particular time when someone gave me a concoction to give her. I put it aside in the house and two days after maggot started coming from the preparation. You will not believe that when I called the attention of the person that gave me the concoction to it, he asked me to give it to the girl with the maggot with an explanation that it was okay like that. Another person said that I should give her a concoction prepared with the antelope meat with a claim that if she ate it, the girl would be able to jump up to her feet like an antelope. All these can be discouraging.”

The Chief Physiotherapist that is managing her case, Mr Femi Ogundapo, said: “Oluwatamilore presents with cerebral palsy, a medical condition that was caused during delivery as a result of prolonged labour. Globally, the number one cause of disabilities among children is cerebral palsy. About 80 percent of disabilities in children have to do with cerebral palsy which is disorder of movement as a result of damage to parts of the brain.

“Essentially, cerebral palsy is disorder of movement as a result of damage to a developing brain. Usually, it is not progressive. It is important that when the brain of a child is developing the number of assaults that a child suffers should be reduced if not eradicated completely”.

According to him, when a child is down with cerebral palsy, the motor movement, speed development and cognition (intelligence) are usually affected. “One has to work on the motor activities, cognition and speech of the affected child. The cognition is handled by the special educator; the motor aspect should be handled by the physiotherapist while the speech should be handled by the speech therapist”, the physiotherapist said.

Speaking specifically about the girl’s case, he explained: “Oluwatamilore is not affected in the area of cognition. She is in school and she is getting promoted from one class to the next class. Usually, a child with cerebral palsy will find it difficult to cope without appropriate instructional facilities because some of them experience intellectual disabilities. However, for her, the motor aspect that has to do with muscle movement is affected”.

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The little girl uses a specialised wheelchair that costs about N150, 000. As she grows older, the physiotherapist said she would need a bigger wheelchair. “That is a big challenge for a single parent to handle. Taking care of a child like this is usually capital intensive and requires the support of both parents as well as government’s intervention.

“It is a clarion call for government to subsidize some of the equipment. A child can have spastic cerebral palsy, 80percent are spastic (which comes with resistance to voluntary movement). It will require a lot of force for a child to stretch or move the hands and the legs. Children naturally don’t want to bear any pain; they end up not wanting to engage the muscles and the bones. That is why we urge parents to bring them for physiotherapy. We also have the cerebral palsy that completely renders the child incapacitated. Those in this category don’t usually live long because they stay at a spot and usually don’t move at all. This is dangerous because they don’t react even when being hurt. The other type is one in which the child can’t maintain the midline position. For instance, they can’t sit.

However, the physiotherapists say that cerebral palsy is preventable. It happens in some events of prolonged labour. Mothers don’t have to go through prolonged labour to prevent this type of case. Our system of scanning has to improve. If the baby is too big you don’t necessarily have to ask the mothers to deliver the baby all by herself. If the baby is too big it can be trapped at the canal. When the baby is trapped, oxygen supply is limited and the baby traumatized leading to things like this. Neonatal jundis can also cause. When jundis is pathologic it stays in the brain and can cause a damage. Infection and failure to stick to recommended antenatal practices can cause cerebral palsy. Some medications that are not ideal for pregnant women may also affect the child”.

Reacting to people’s attitude to children with cerebral palsy, the physiotherapist said that the condition was not genetic adding: “There is no basis to stigmatize or desert them. Disability increases the chances of having depression. Let children with special needs be welcomed by the society”.