MOTUNRAYO JOEL of Punchng.com writes about some myths of cerebral palsy and how mothers are bracing the odds
For 32 years, Ms Tobilola Ajayi, has been living with cerebral palsy. She said she realised she had the disorder when she was five.
She tried to explain that her inability to do things other children could do easily was one of the ways she became aware of the disorder.
Aside from learning how to adapt and cope with the disorder, Ajayi, who has a masters degree in international law, said she had to turn a deaf ear to myths of the disorder.
She said, “Growing up, I can still remember people saying cerebral palsy is a spiritual attack and that persons living with it need spiritual deliverance. Hearing that gets me upset because it hinders parents from giving their child with the disorder the necessary medical help they need. There is also a myth that persons with cerebral palsy don’t live long. I am 32 years old. Persons with CP have a normal life expectancy. That is not to say that complications do not occur. They do and if badly managed can lead to death.”
Ajayi, a writer who has received recognition for her work, said her parents weren’t moved by the various myths surrounding CP. She added that the support she got from her family is one of the reasons she has a success story.
“I was placed on therapy for about 15 years. I had a supportive network of family and friends which helped a lot,” she said.
Enduring myths of cerebral palsy
The founder of Cerebral Palsy Initiative, Nonye Nweke, expounded on some of the myths surrounding the disorder.
“I hear people say they cannot eat, drink, or sleep in the same room with a CP patient, or touch him or her, fearing that it may be contagious. CP is not an infectious disease; it is a brain disorder. We must stop spreading untruths about CP,” she said.
“CP is not hereditary. The symptoms can evolve gradually in the affected child but the injury to the brain is not progressive. Many people think CP is hereditary. It is not,” he said.
Mrs. Bidemi Akin (not real name), whose daughter has the disorder, said for years she believed it was due to her partner’s infidelity.
“There is a myth that a child with CP must be a product of infidelity. For years, I was faced with the stigma that my child is a product of infidelity. It took a lot of work on my part to ignore the myth. Anything I went out with my child, I saw the way people stared at me. I thank God for awareness; more people are becoming aware of the disorder,” she said.
Oluwabusola Akinsola, 36, with cerebral palsy, also stated that she rigorously fought against the belief that persons with CP are useless to society.
Akinsola added, “The myth I was constantly tormented with is that persons with CP cannot achieve anything good, especially in academics. Today, I hold a master’s in international economics and trade. I have a degree in economics with lots to achieve. I see challenges as stepping stones to successes in life.”
The incurable brain disorder
“It is a condition that is permanent, but not unchanging,” he said.
A professor of neurology at the University of Nigeria Teaching Hospital, Ikenna Onwuekwe, explained that the disorder could be classified based on the type and location problems.
He added that there were different levels of severity among each case of the disorder. Its four main types are spastic, athetoid/dyskinetic, ataxic and mixed.
He said, “The most common type of cerebral palsy is known as spastic cerebral palsy. This is caused by damage to the brain’s motor cortex. Typical symptoms include stiff, exaggerated movements. Athetoid/dyskinetic CP is caused by injury to the brain’s basal ganglia, which controls balance and coordination. Children with athetoid/dyskinetic CP often exhibit involuntary tremors.
“Ataxic CP is characterised by lack of coordination and balance. This is caused by damage to the cerebellum, which is the part of the brain that connects to the spine. For mixed CP, some cases of cerebral palsy are classified as mixed. This occurs when an individual exhibits symptoms of more than one type of CP.”
Speaking on the signs and symptoms of cerebral palsy, Onwuekwe, said they appear during infancy or preschool years.
In general, Onwuekwe noted that cerebral palsy causes impaired movement associated with abnormal reflexes, floppiness or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteady walking, or some combination of these.
He said, “People with cerebral palsy may have problems swallowing and commonly have eye muscle imbalance, in which the eyes don’t focus on the same object. They may also suffer reduced range of motion at various joints of their bodies due to muscle stiffness.
“Cerebral palsy’s effect on functional abilities varies greatly. Some affected people can walk while others can’t. Some people show normal or near-normal intellectual capacity, but others may have intellectual disabilities. Epilepsy, blindness or deafness also may be present.”
Onwuekwe said the disorder occurs when a newborn is deprived of oxygen during labour and delivery. He noted that mutations in genes that lead to abnormal brain development can cause the disorder.
Other factors of the disorder he said include maternal infections that affect the developing feotus; fetal stroke (a disruption of blood supply to the developing brain); infant infections that cause inflammation in or around the brain; and traumatic head injury to an infant from a motor vehicle accident or fall
He continued, “Lack of oxygen to the brain (asphyxia) related to difficult labour or delivery is a cause, although birth-related asphyxia is much less commonly a cause. A woman may have a condition while she is pregnant that can increase the chances of her baby having the disorder. Among them are being pregnant with multiple births such as twins or triplets; having blood that is not compatible with your baby’s, which is also called Rh disease; and having a health issue such as seizures or a problem with your thyroid gland.”
For prevention, Onwuekwe said it is important that a pregnant woman take necessary measures to minimise or prevent pregnancy complications.
Urging pregnant women to ensure they get vaccinated, he stated that vaccination against diseases such as rubella may prevent an infection that could cause fetal brain damage.
He said, “Secondly, take care of yourself. The healthier you are heading into a pregnancy, the less likely you’ll be to develop an infection that may result in cerebral palsy. Furthermore, seek early and continuous prenatal care. Regular visits to your doctor during your pregnancy are a good way to reduce health risks to you and your unborn baby. Seeing your doctor regularly can help prevent premature birth, low birth weight and infections. In addition, practice good child safety. Prevent head injuries by providing your child with safety items.”
Brave mothers bracing the odds
A mother of three, Mrs. Olufunke Adenugba, described her pains as an endless journey. Since giving birth to her son, Toluwani, she said life has been hard.
“My son is seven years old; you can imagine what I have faced for seven years. It has been seven years of pain and tears. Any mother whose child has the disorder will tell you that shedding tears comes easy to us. There are days I would cry for hours at a stretch. Watching one’s child finding it difficult to move or walk is painful – extremely painful. There were days I felt like committing suicide” she said.
Adenugba said her son’s condition pained her because she faithfully did all she was asked to do while pregnant.
“I don’t know want went wrong. While I was pregnant, I took my routine drugs and went for antenatal regularly. I was a dedicated pregnant woman, if you know what I mean. I neither drank nor smoked. I also didn’t go against my doctor’s orders,” she said.
On the day she gave birth, Adenugba said she was in labour for hours, adding that there were moments when her baby tried to push his way out but failed.
“I could feel him struggling to come out. Sometimes, he would try hard and then relax. According to the doctors, it got to a point when he felt really weak. When he was brought out, he didn’t cry for long. He only made a sound and that was it. Even when the nurse spanked him a little, he didn’t cry. The doctors then told me that during the period of my labour, he had a brain injury,” she said.
Adenugba said the news about her son’s brain injury hit her like an arrow. She said she decided to remain positive about her son’s health condition, hoping he wouldn’t end up with cerebral palsy.
“I tried hard to remain positive but as my son began to grow, I realised that the earlier I accepted the fact that he has CP, the better for me. Since then, I take each day as it comes. I don’t know how I survived till date,” she said.
Also, another mother of a child with the disorder, Mrs. Onyiye Nwoke, said she often feels like committing suicide.
“My son has CP and he is six years old. I have three children. I tell anyone that it is the grace of God that has kept me alive all these years. Apart from the fact that I felt like committing suicide, many people advised me to kill my son,” she said.
Nwoke said choosing to ensure that her son stays alive is the biggest decision she has had to make. She added that there are days when people make her feel stupid about her decision.
She stated, “Till today, some mothers advise me to inject him to death. I cannot imagine injecting my son no matter how tough life is, I would never do that. This is not to say I didn’t ask God why He singled me out for this challenge.”
For Ms. Oluchi Chidebere, if she could, she would do everything to prevent her only child, Precious, from having the disorder.
She said, “I call her Precious because she is precious to me. I had her at a young age. I still remember when she was born; I was excited to hold her in my arms. She looked sweet and beautiful. I shed tears of joy. I didn’t plan to have her but I wouldn’t call her a mistake.
“I only knew about her disorder when she was six months old. Since then my heart has been basking in pains — both emotional and physical pains. No mother prays to have a child with CP. No matter how wicked a mother may be, she would never wish such for her child. Whenever I look at the love of my life – that is my name for her, I cry. Precious is 9 years old and yet the pains haven’t disappeared. Many times I ask God why.”
As she spoke, Chidebere intermittently caressed Precious’ right hand that had incomplete fingers – a condition medical experts call symbrachydactyly. That act by her mother made Precious grin.
“I still have dreams for my daughter. I pray someday she would be able to live a normal life, or at least be able to live an independent life. I don’t wish for her to be attached to me throughout her lifetime. That is a wish; I pray God answers my wish,” she said.
Nineteen-year-old Rukayat Rammon on the other hand has experienced her own share of pain. At the age of 10, she had to stop school to take care of her younger sibling, Amina, who has the disorder.
She said, “For two years, my life was full of pain. Watching my sister struggle through life was hard for me, I guess because I was quite young. I didn’t understand the disorder and I didn’t understand why she had to have the disorder. It was tough for my family.
“But I’m glad to say that my sister Amina is beginning to pick up. She has improved a great deal. But it didn’t come easy. It cost us our time and money. I still remember taking her to the clinic for therapy; no doubt it was time consuming but worth it.”
Adeboye explained that in most cases, cerebral palsy is caused by brain damage that develops while the baby is still in utero, during or shortly after birth.
He said, “There is currently no cure for cerebral palsy, but there are numerous treatment options that can help babies and children live quality lives that turn into successful adult lives.”
It has been four years since Mrs. Justina Paul’s life took a dramatic twist. Staring at her son as he struggled to nod to the music playing in the background, it was obvious she was fighting back tears.
“I don’t like crying in front of my son. This doesn’t mean shedding tears isn’t a familiar path for me. I’ve been crying from the first day I gave birth to my son Elijah. I would be lying if I say life has not been hard,” she said as she tried hard to hold back tears.
Dressed in a brown Ankara, Paul said she had to quit her job to take care of her only child.
After Elijah was born, she said there were nights she would walk out of her house traumatised like a deranged woman.
“No mother can understand my pain, unless they have a child with cerebral palsy. Do you know what it takes to care for a child with the disorder? After my son was born I hated life; I hated myself for bringing him into this world to suffer. I am not joking when I say I almost ran mad. I kept asking God why he allowed this to happen to my son. I felt like He didn’t love me. I don’t wish for my enemy to walk in my shoes. I don’t pray for any mother to have a child with the disorder,” she said.
Till today, Paul said she gets emotional whenever she thinks about the fact that the hospital hid her son’s condition from her.
She said she didn’t know that her son had cerebral palsy until she went back to the hospital where she put to bed, to complain about his ‘really slow’ development pace.
Paul said, “My son is a twin; his twin brother died at childbirth. As if that was not enough, I later learnt that the doctors at the hospital where I put to bed knew all along that he has CP but kept the news from me. I don’t know why they did that.
“I still remember all that transpired the day I revisited the hospital – one of the general hospitals in Lagos state. After I complained to the doctors about my son’s inability to sit and move parts of his body, one of the doctors said ‘Ah! Didn’t they tell you?’ Those were his exact words. I then said,’ tell me what,’ he said at birth they observed that my son had a brain injury that was how they knew that he has CP.”
Saying she discovered her son’s disorder when he was about seven months old, Paul added that if she had known early, she would have taken some medical steps.
A neurologist at the Department of Medicine, University of Ilorin Teaching Hospital, Kwara State, Dr. Wale Adeboye, said cerebral palsy is the most common motor disability in childhood.
According to him, the disorder is a group of disorders that affect a person’s ability to move and maintain balance and posture.
“It is a condition that is permanent, but not unchanging,” he said.
Ms. Yewande Ojo has cerebral palsy. Now in her late 30s, she said she has been able to manage the disorder, but that it didn’t come easy.
“It is only when I talk that you would know that I have the disorder. Most times, I don’t want to think about the humiliation I faced as a young child. I used to get bothered with the way people stared at me; I had to put up a brave face – that wasn’t easy though,” she said.
A glimmer of hope
According to a consultant paediatrician/paediatrician neurologist, Dr. Ebele Aronu, there is hope for persons with the disorder.
Aronu said, “Cerebral palsy can’t be cured but it can be managed. A child with CP can live an independent life, but it all depends on the type of care the child receives from parents and care givers. If a child with CP is cared for, the child can live long.