By Josfyn Uba And Christine Onwuachumba
Nonyelum Nweke’s journey into the world of children with cerebral palsy started out of her desire to parent a child. She had no biological child and the only option open to her was adoption, which she gladly took to.
However, the adoption turned out a “situation turned bad,” her adopted daughter had cerebral palsy. And the child is her only child.
Since then, she has chosen to live with it, and now Nweke sees it as a road through which she has found peace and purpose in life.
Seven years down the line, Nweke’s pains have been turned into purpose and fulfillment.
In an interview with Daily Sun recently in her Surulere, Lagos, office, Nweke, who is the coordinator and founder of the Cerebral Palsy Centre (CpCentre), told her story, her fulfillment and why she is not interested in having another child.
It has been seven years since you started the centre; would you like to share with us some things you’ve learnt along the way?
I have learnt a lot since starting the centre, more than I knew back in 2010. These are not things formally learnt. They are combinations of what you hear the doctors say about children with cerebral palsy (CP), things you read in books and on the Web and things learnt as a mother, a service provider and a caregiver of sometimes up to 19 other children with CP at a time.
Some of these are contrary to common beliefs here in Nigeria. Most parents with children with CP love their children just like they do to other children. They want to help their children. What they lack often is the means, as there are no facilities and support systems available to them.
CP is more common among children than most people know. It is the most common motor disorder among children. Statistically, it is said to affect 10 out of every 1,000 (that is 1 out of 100) live births every year in Lagos, yet we do not see these children.
Though it is not curable, with the right therapies, treatment and support, the lives of children with CP can improve tremendously and they can reach their full potential.
Apart from being a parent to a child with cerebral palsy, are there other life-changing situations you have encountered?
Starting the Cerebral Palsy Centre) was life-changing for me. It is the first of such a centre in Nigeria as far as I know, thus there was no model to follow.
When I started the centre, children were brought in the morning and were picked up in the evening. By the fourth year, the need to run a boarding facility became imperative. I had to apply for approval for that.
In 2015, the centre, with the approval of the Ministry of Youth and Social Development of Lagos State, I started a boarding facility for children whose parents live far from the centre, and this brought me into situations where I had to take up abandoned children with severe CP, children with CP whose mothers died and the fathers were unable to take care of them.
It was totally life-changing for me. The children have become my responsibility.
What message or advice do you have for parents whose child is diagnosed with cerebral palsy?
I would advise that you quickly arrive in what I call the “bus stop of acceptance.” That is the stage where you accept the fact that your child has CP.
It is only with this mindset that you can think of how to help your child. CP is not the best diagnosis but at the same time it is not a tragedy. Nobody can take care of your child better than yourself. It is your responsibility to do that. So, having a child with CP is a life-changing event, thus you do not expect to keep doing things the way you used to, unless you do not want to help the child.
I believe that everything God allows is for a purpose. You will find that purpose when you truly commit to help your child. You must look beyond your child.
What are the likely causes of CP and are there any preventive measures to avoid this condition, especially with the state of the health system in Nigeria?
In Nigeria and most developing countries, the major causes of CP include severe birth axphysia. That situation is when a baby comes out not crying, which means the baby is not breathing and not taking in oxygen. This affects the brain. This often happens when there is prolonged labour.
The other is neo-natal jaundice, which occurs when a baby has high level of bilirubin in the blood. Bilirubin is a yellow substance that the body creates when it replaces old red blood cells.
I think that, with better medical attention, these incidences could be reduced, if not totally avoided. To me, cases of jaundice are clear malpractices. Hospitals should be equipped not just with facilities to monitor the bilirubin level of babies but with facilities to start treatment as soon they realise that the level is high. Also, doctors should advice mothers on the need to have caesarean section deliveries, if the need arises, instead of being in labour for a very long time while opting for natural birth.
On motherly love, do you desire having more children, either by natural birth or adoption?
This journey of Nonye and cerebral palsy started out of my desire to parent a child. I did not have a biological child. The option for me was adoption and I took that but it turned out that my daughter had CP.
It may appear to be a “situation turned bad” but, instead, I choose to see it as a route through which I found my purpose in life. Painful, yes, but all the pains have been turned into purpose.
As for having other children, there is no room for that. I have with me children abandoned by their parents. Children whose mothers have died and the fathers are not able to take care of them. It appears as if I am destined to improve the quality of lives of this group of children. I am at peace with that.
With your experience, what would you say are peoples’ attitudes towards children living with cerebral palsy?
There has been positive change in people’s attitude towards children with CP. Of course, that is attributable to the fact that there is increase in awareness and understanding of the condition. Since the inception of CpCentre, a couple of organisations and even individuals, adults with CP, have come up and joined the campaign of creating awareness of the condition.
And with the Internet now more available to a wider population, people can read up on the condition and know that it is only a medical issue and has nothing to do with those negative thoughts that were associated with it in the past.
What would you say are the successes as a result of your campaign on cerebral palsy in Nigeria?
Apart from the fact that my starting CpCentre has made a good number of parents and some adults with milder forms of CP to join in the campaign of creating awareness of CP and a few providing services, what I count as successes are the children whose lives I directly touch, parents, particularly mothers, single mothers, who are able to improve their lives because I am helping them take care of their children.
Then, children who have made remarkable progress, especially those who, without the centre, most likely would not have made that level of progress, like the child who has progressed so much not only is she in a mainstream school, but we were able to get her a scholarship.
How have you been running the centre, do parents pay fees?
We are sustained by the goodwill of individuals and some organisations, especially faith-based organisations. Parents do not pay us any fees.
In fact, most of them cannot afford to pay. Those who can are moved to support the centre. My dream is that parents, families will “own” the centre and see it as their responsibility to see to the survival and growth of the centre. We look up to individuals and organisations for support.
What is your greatest challenge?
Apart from staff wages and administrative cost of running the centre, our greatest need is accommodation. We are at the moment in a rented property. Apart from being expensive, it is ill-fitted for the growth we have attained and the purpose we hope to achieve for the children. We desire to have a purpose-built facility, a home for children with CP. We would love a piece of land for this purpose.