What it means to have a child with Cerebral Palsy

Children with disabilities are usually left out of sight, stigmatized and this has a huge impact on the individuals and families even as the government makes no provision for them. However, Nonye Nweke, the CEO and founder of Cerebral Palsy Centre (CPC), Surulere, Lagos has taken up the enormous task of providing respite for parents and care givers, improving the prognosis of children diagnosed with CP, increasing societal awareness of the condition and spear heading policy changes that will positively affect children living with CP. LARA ADEJORO writes

From dawn to dusk, parents’ lives are shaped by the birth of a child with special need especially a child with Cerebral Palsy (CP) as they have to deal with the task of taking the child for medical appointments, therapists, getting the needed equipment and services, address behavioural issues and watch over almost everything. This might be more difficult if the family members are not supportive.

Having a child with CP also means learning how to navigate systems, having extra time for your baby, giving up your career, refocusing one’s life, acquiring new skills and perhaps, becoming an advocate for children with special needs.

Nonye Nweke adopted Chizimuzondu as a six–day old baby. However, she noticed after a couple of months that Zimuzo, as she’s fondly called, was not developing appropriately.

“At four months, she was yet to hold up her head, reach for toys or do any of the things babies her age would do. She used to shake and shiver like she was always cold.”

Her concern was dismissed by a doctor with a wave of hand, “some babies are naturally slow developers”. But, at five months, Zimuzo was diagnosed with CP at Owerri Sick Bay, Imo State.

CP is a group of problems that affect body movement and posture. It is related to a brain injury or to problems with brain development. It is one of the most common causes of lasting disability in children. CP causes reflex movements that a person can’t control and muscle tightness that may affect parts or all of the body. These problems can range from mild to severe. Intellectual disability, seizures, and vision and hearing problems can occur.

“Cerebral palsy is a stark reality that your child is different and there are no services for them and you find out that most times, there are no support or provision from the government for them,” Nonye said.

Though, the doctor, the owner of the hospital advised Nonye to return the baby but against all odds, she was convinced that such a baby needs a mother to love her specially.

Nonye and Zimuzo

Having read a lot about CP, she concluded that Zimuzo needed a lot of help which only a mother can offer.

She started a search for a place that cares for children with CP, where she could leave her baby during the day while attending to her fast food business.

After the long search, when Zimuzo turned one, she found a centre that cares for children with various forms of disabilities but after gaining more knowledge about CP, she realized that a lot of parents with children with CP face a similar challenge too.

She then shut down her business in 2009 to establish CP Centre in 2010.

“From my experience, crèches don’t accept them. My daughter was 7 months old when I took her to a crèche; that very day, I was asked to come and take her back because other mothers were withdrawing their children.

“I’m doing this to solve a problem that confronts families. Most families don’t have anywhere to take their children to and this causes a lot of problem at home, this may get the child isolated and the mother may not have any social life, the centre is there to provide support for families.”

According to Professor Afolabi Lesi of the University of Lagos, 10 out of 1000 which is 1 out of 100 live-births every year results into CP in Lagos state “and we are not talking about those we have with the Traditional Birth Attendants (TBAs) or those that didn’t go to the hospital. That tells us how big the problem is and the number of children that have cerebral palsy every year,” Nonye said.

Speaking on lack of support for children with disabilities in Nigeria, she said, “For instance, my child is 10, she should be in a school but because she’s severely affected, she’s not able to function well in the school. So, with a child like that, they are not able to live a normal life because you’re with the child all the time.

“The challenges are enormous. First of all, it is expensive because CP must have physiotherapy every day, at least 3 times in a week and if you’re keeping a job, you’re not able to do that because you won’t be able to take your child to the hospital for management and the other option is to invite a physiotherapist to work with your child at home but that is expensive.

“The cost of daily living starting from buying diapers because most of them are incontinent and cost of medication especially for those who have seizures. Also, because most their muscles are weak, most don’t breathe well, they don’t swallow very well and so, they are constantly having pneumonia and they have to constantly go to the hospital for management.”

Generally, people stigmatize people with disabilities. “People dislike what is different and because of lack of knowledge, people don’t understand that it is a medical condition, so they look at them as if their parents have done something wrong or as if they are witches or wizards. We need more awareness so that they’ll know.”

There, there is a support, from when the child is diagnosed with CP, the child begins to bet support from the government and there are facilities. Once your child is diagnosed with CP, they send youna support system and as a child grows, there are services for such child and the child over there thrives better tan children in Nigeria.

In many cases, the exact cause of cerebral palsy is not known.

According to WebMD, some people who have cerebral palsy have a slight limp or a hard time walking. Other people have little or no control over their arms and legs or other parts of the body, such as the mouth and tongue, which can cause problems with eating and speaking. People who have severe forms of cerebral palsy are more likely to have other problems, such as seizures or intellectual disability.

“Even though cerebral palsy can’t be cured, you and your child can do things to help deal with symptoms, prevent problems, and make the most of your child’s abilities. Physical therapy is one of the most important treatments. Medicines, surgery, and special equipment such as a walker can also help,” it says.