By Dr. Zainab Bagudu Shinkafi –
In the course my multifaceted life, I cross many interesting people, principles and conditions. Some of them are so recurring I can predict with reasonable accuracy. One of such is the appearance of totally cancer unrelated issues at our Medicaid cancer outreaches. Thus, I wasn’t really surprised to see this elderly woman holding a physically disabled child in her arms blocking my path during a recent cancer screening in Augie local government area of Kebbi State.
One glance told me the story. Or rather, my ‘stereotypical-snobby-educated’ mind assumed I knew her story. I thought to myself, she’s heard ‘Matar Gwamna’ is in town with her foundation that offers free treatment and instant solutions for all and any disease. We see a spectrum of diseases not limited to cancer but mostly all are in the pathetic fumigating end of life stage. The patients would also have gone to all manners of faith and herbal healers but hardly to a proper hospital. So I knew in my head she has brought the boy after touring all the local healers and expect I can make him walk. Being a population of believers with neither formal education nor awareness on most diseases, with little faith in the health facilities at their disposal, that is the thought process of most of my people in Kebbi.
I looked. The boy obviously had long standing cerebral palsy. My brain cells remind me, Cerebral Palsy is a permanent irreversible condition. Yet this mother expects me to proffer answers that I did not have. Answers, that modern science itself does not yet have. Such expectations can be burdensome and one gets fatigued like I was that afternoon. I am after all, only human. Yet there was no way I could walk past this woman and her grandson. For starters I have sworn a Hippocratic Oath which binds me to assist any needy person with my skills at all times. Secondly, I am bound by the oath of marriage to the chief executive of the state who has sworn to uplift the life of this woman and child and so I am indirectly compelled to stop.
Thirdly and most importantly the child the most heart-warming smiles across his face that could stop the fastest moving train. So I lived up to my responsibilities and stopped to listen. As it turns out, I was partly right and partly wrong. Yes, she heard about the outreach and had come not to have her cervix or breast tested, but to bring this child to be seen by me and my doctors. She was confident we could help him walk and she added as I expected; by the will of Allah. That is where my right guesses end. He was not her grandson as I had assumed, he was her son, her 5th child. She had not explored not only traditional healers but been from hospital to hospital trying to find a cure. Even though I was guilty of labelling and stereotyping this mother, it was still a clear case of unmanaged cerebral palsy and he already had obvious limb flexural deformities.
His smile and the love with which she held on to him were so heart-warming that I wished silently that I could make him not just walk, but fly. The reality was that I could not. So, I told her as firmly as I could that there wasn’t much anyone can do to cure him. His was not a case for a cancer screening outreach. I turned to Khadijat Sama, my hostess and wife of Augie LGA chairman to discuss with me further so that we can send him to a bigger general hospital.
The life of a wife of leader is not one of glamour. We exist in an ocean of unending need, waves of expectations and grainy resources. Furthermore, however good ones intentions are, things can, and do slip. With an efficient team it is easier to follow up and keep track. The wives of the 21 LG chairmen in Kebbi state have become my able lieutenants. They exemplify the words teamwork, unity and success. As a result, I was not surprised when Khadijat sent me a message the next night at 10pm to remind me about the boy Yusuf. She wanted to know what to do.
I squared with her and gave her a mini lecture. Cerebral palsy CP, is a permanent condition that makes movement, posture and coordination difficult for children suffering from the condition. The condition is caused by damage that occurs to the fetal brain usually before, during or around birth. The causes are often unknown. What modern medicine offers them in is supportive care. Physiotherapy for the chest and limbs, Movement and hearing aids, drugs to reduce stiffness seizures and spasms and so on.
We don’t have the high end of these supportive aids in Nigeria, but we do have the basics. Even when resources are available, the line of management to pursue is a tough decision for policy makers, doctors, parents and caregivers to make. The NHS (the excellent but often unappreciated British health insurance system) spends a minimum of £60,000 per annum on each child with CP. Almost N30 Million naira. That figure doesn’t include the cost of new operations to improve mobility like Selective Dorsal Rhizotomy SDR, which are now being offered on the NHS.
Its a tough decision for executives to make if to plunge such resources into one life or spread it and save many more with simpler ailments. If I put in my context, I can cure and save the lives of almost 10,000 children yearly from malaria fever with that amount. The dilemma is no less for parents. The average lifetime expenses for the family of a child with CP can go up to one million pounds. Parents have to decide- Do they keep such children at home surrounded by love? Whilst taking on the burden of care which can be extremely and continuously stressful; or do they institutionalize them with super machines to lift clean and feed them like robots? Whichever side of the spectrum one stands, It can be a complex call.
Fortunately or unfortunately in the case of our Yusuf I wasn’t required to make such a decision. I have simple resources in a simple set up. So, I kept it simple. Armed with a fair understanding of the health facilities she would have been to, I asked the wife of the chairman to find out how his mother moves him around. She came back within 5 mins to give an expected answer, carrying in her arms. The next day we sent him a wheelchair, some food and toiletries. Simple things that will make a difference to his complex disorder. At least for now. The family was ecstatic with our little effort. They had some respite. We screened 530 women in Augie. It took weeks of planning and resources to achieve. However I am certain by far the greatest impact we made, was on Yusuf’s life. With a simple, unplanned gesture.
As always I took away some moral and practical lessons from the narrative above. I will allow readers draw out what they can from their perspective. I will however focus on one issue. The need to simplify our approach to problem solving.
Yusuf does not need a highly specialized physician to make his life better, he needs a competent physiotherapist, a competent social worker and an ingenious occupational therapist. He needs supportive care. Yusuf’s physical problems are as complex as our health system. Yet he has survived this long on the simple but strong support structure of his mother, carrying him in her arms, with all the love she can muster.
Typical Nigerian parents push children to be Lawyers and doctors forgetting the vast number of careers we lack in our country. We no longer have proper guidance councillors in our educational institutions. We need more Physiotherapists’, speech therapists, orthodontists, biomedical technicians, logistic and supply chain managers…an endless list. So why do we push children to live our dreams when their skills and interests might be better placed elsewhere? Ego. It certainly isn’t financial anymore because the baby doctors and lawyers our universities are churning out don’t even earn that much and no longer have automatic employment guaranteed.
Our policy makers focus on high end consultants and fancy work plans when we don’t have people skilled to do simple things like collect data accurately or to file our papers properly. Most of our health centers lack running water and electricity. Yet we keep building 300 bed hospitals with no human resources to run them. We buy 21 Tesla MRI machines yet have 4 only Biomedical Engineers cross crossing the country to service them. Can you see the sense? I can’t see it. Can you?
We have to start with the simple solutions, grab the low hanging fruits by fixing the primary health care level and excel in that. That is when we can hope to stop seeing the late stage complicated and end of life presentation of diseases that is common place to doctors in developing countries. Cases our colleagues in the West only get to see in text books. Let’s sort the basics, then move on. We have to do this with our thought process, our plans and our actions. Keep it simple.
To end, I would like to appreciate those who read my rants and have something positive (or not) to say. It has been encouraging. In particular my husband who not only encourages me but is my greatest and quickest handy encyclopaedia of facts to fill gaps. I know he’s sometimes apprehensive when I start asking him questions whilst tapping and he is now quick to add please don’t write that. (Whatever happened to freedom of speech?) My form 3 history teacher Mrs Kpaduwa was the probably the first to point it out. Sadly I had to drop history as a subject so she didn’t get the chance to nurture me further. History did not fit into my parents dreams of having a ‘Doctor Daughter’ (That was not a protest).
However, I believe I owe the tendency to those same people; my parents. I am thankful and appreciate the fact that I do enjoy writing. Yet I have been unable to put it together in a single book form. I start one topic then like a child with attention deficit hyperactivity disorder, I jump to another I find more interesting. I need to work on that as I can never let a ghost writer finish my words as has been suggested. In the meantime until I can cure my ADHD, I have to stop the nagging and push from people like Ellie and Dr Lawal. So I am going to borrow from the strength of Banky W. and start #ChroniclesOfDrZSB. I hope that we can travel and learn together in a way that will benefit humanity as it exists around us.
*Dr Zainab Shinkafi-Bagudu is a Paediatric Consultant, Wife of Kebbi State Governor and Founder Medicaid Cancer Foundation.