Smile Train is an international children’s charity with a sustainable approach to a single, solvable problem: cleft lip and palate. According to the organisation, millions of children in developing countries, including Nigeria, with untreated clefts live in isolation, but more important, have difficulty eating, breathing and speaking. Cleft repair surgery is simple, and the transformation is immediate. Its sustainable model provides training, funding, and resources to empower local doctors in developing countries to provide 100 per cent-free cleft repair surgery and comprehensive cleft care in their own communities. In this interview with Obioma Ogbonnaya, Mrs. Nkeiruka Obi, Smile Train, Programme Director West/Central Africa, throw more light on the activities of the organisation on the continent
How will you assess the activities of the Smile Train in Nigeria and West Africa?
I will begin by saying that Smile Train System architecture is anchored on four pillars: medical, technology, donors and programmes, which revolve around financial help to poor patients, who cannot afford the cost of surgery and training of medical professionals to upgrade their skills. What makes us unique is the fact that all of the surgeries we fund are performed by local doctors in local hospitals through free training, equipment and financial grants; we are helping communities to become self-sufficient. Small Train has been in Nigeria for 10 years. Since I joined in 2011, we have been able to grow the programme in scale and numbers by over 400 per cent by simply using the ‘teach a man to fish’ model which has enhanced the sustainability of the programme for longer term. We empower the local medical professionals to provide free, safe, and high quality comprehensive cleft care to as many patients in their own local communities all year round. We have created over 25,000 smiles (and still counting) in the region. And I can tell you that the impact has gone beyond creating simple smiles. It is phenomenal and revolutionary.
What were some of the initial problems you encountered and how were you able to tackle them?
The West and Central Africa region is a diverse multicultural territory with an estimated 390 million population, yearly cleft birth of 12,000 in 22 highly segmented countries of three different major international languages – English, French and Portuguese. Travelling is prohibitively expensive due to the poor transportation system. We’ve had to deal with insecurity, terrorism and unstable political climate with the attendant adverse effects on the people and governance. In Nigeria, we keep experiencing incessant strike actions by medical professionals. And as in several areas of healthcare, the human resources and facilities available for the provision of comprehensive multidisciplinary care of patients with cleft lip and palate deformity on the continent are very limited. Initially, it was insufficient cleft surgeons and cleft care practitioners in the Francophone, Central Africa and some English-speaking West African countries like Liberia, Sierra Leone and The Gambia. So, my first task was to identify surgeons in these countries who are interested in cleft care and organise training for them so as to reinforce the scientific foundations of cleft surgery and provide them hands-on training in surgical techniques. There has been significant progress in this area.
Then, the challenge of infrastructure and equipment; most hospitals have poorly equipped operating theatre. Our number one priority in cleft care is ensuring the safety of the patient. Smile Train has provided partners with equipment such as anaesthesia machines, pulse oximeters and cleft sets/instruments. This in no small measure has helped in improving the quality and safety of surgeries and care of our cleft patients. Worthy of mention is the Smile Train Global Oximetry project which has been of tremendous value. These pulse oximeters are what I simply call ‘Life Savers’. Not only are they crucial in monitoring the oxygen saturation of the patient who is under the administration of anaesthesia intra-operatively or post-op operatively, they are portals, durable and come with long-lasting battery life – which allows it to work without direct electricity. This is a plus considering the challenge of epileptic power supply in the region. We also have issues of malnutrition and underweight babies. Many of the children come from challenging environments including IDP camps and require nutritional rehab before surgery can be performed.
Cleft deformity comes with a lot of psychosocial problems. Many children with cleft lips or palates suffer discrimination and their family is traumatised. Those who manage to reach adulthood are often banished to a life of isolation. We still have a huge backlog of adult cleft patients in the region. So, lack of awareness is another challenge. The need to educate our people that cleft has no spiritual connotation cannot be over-emphasised. As was the case with twins before the great Mary Slessor, our people regard children born with cleft lip or palate as evil occasioned by witchcraft or punishment from God. This is why the support of the media is very important to help us propagate the message of hope and the availability of this service to our people. No cleft child should be left to suffer any extra day. Smile Train is here to help.
How would you compare the case of cleft lip deformity in children among West Africa, Latin America and Asia?
Cleft deformity is a major problem in developing countries where there are millions of children suffering with unrepaired clefts. We know from reviewing the World Health Organisation data that every year more than 170,000 children are born with cleft lip or palate in the developing world. It’s a common birth defect. In fact, globally one in every 700 children is born with it. One in 1,200 children estimated cleft incidence is of Africa/Africa descent. 19,000 cleft children are born every year in Africa out of which 12,000 in West Africa and 6,000 in Nigeria alone. In my opinion, these figures could be underrepresented because they are based on registered hospital birth records. How about babies that were delivered at home or at the farm? Cleft babies are usually born to parents of low socio-economic status; many in the rural areas, with poor access to care. Sadly, the problem is enormous and not a priority of most governments. This is why the support of Smile Train is very commendable.
Is there a way the deformity can be detected before birth?
Yes, it is possible to detect cleft deformity in a child before birth through the use of ultrasound scan. A cleft is a harmful condition though not life-threatening in which the roof of the mouth and/or top lip does not close properly. It occurs due to errors in the growth process when the different parts of the face are formed in the womb. Normal lip development occurs between four and six weeks of gestation, while the palate develops between six and 12 weeks. The upper lip develops from the fusion of two different processes – failure of fusion results in cleft. So, when the cleft is picked from the imaging, the family gets well informed and prepares ahead to what to expect and the available treatment services.
Why does cleft occur?
It is still a medical mystery. Research is ongoing to better understand the condition. No one knows exactly the cause, but most experts agree that there is an interplay between many genetic (internal) as well as environmental or nutritional (external) factors. Some cleft are isolated (sporadic) and others syndromic (associated with genetic mutations). Parents who have family history of cleft have a high risk of giving birth to cleft children. It could be environmental: poor nutrition, wrong use of drugs, folic acid deficiency, infection, habits – smoking and high alcohol in-take, exposure to ionizing radiations and even parental age. The only solution today is a simple life-transforming surgery that costs as little as $250 and takes as little as 45 minutes.
What has been the success rate of cleft surgery in Nigeria and West Africa?
Typical like any other surgery, there are risks involved. At Smile Train, we have had very good success rate and near-zero mortality rates. Our number one priority is to ensure the safety of the patient, and it is the guiding force behind every Smile Train programme and initiative, and our doctors and associated medical professionals abide by our strict standards to ensure patients receive the highest level of care possible. If a child has a cleft, he can live with that defect for the rest of his life. The only thing is that the child may not enjoy life to the fullest like a normal person. Thus, cleft, for us, is still an elective procedure not an emergency and the repair must be done under the safest condition. We subject our partner hospitals to a rigorous credentialing process to ensure that the safety and quality protocol are met. Then we sign a Treatment Partnership agreement that would factor in the anaesthesia and surgical guidelines, timelines, safety and quality assurance checklist among others. If the partner does not meet and adhere to these requirements, they obviously cannot be on board the Smile Train. Our partners have attested to the fact that meeting Smile Train standards has immensely helped them to improve on their overall healthcare service delivery systems even for non-cleft related cases and many have successfully got accreditation from through various bodies.
Why do you choose to train your doctor-partners?
Again, we provide training to everyone involved in cleft care – nurses, surgeons and anaesthetists, dentists and orthodontists, speech therapists, social workers, community-based workers. This is primarily to build local capacity, improve skills and expertise in providing comprehensive cleft care and for long-term sustainability. We also want to position our surgeons in the global arena and network of world-class cleft surgeons. We sponsor and give scholarship for international conferences. It is important to note that since 1999, Smile Train has performed over one million (still counting) free, safe and high quality surgeries in more than 85 countries. A recent study of Global Economic Impact of Smile Train Cleft surgery published in the World Journal of Surgery shows that for every $250 committed for one cleft repair surgery, as much as $50,000 is put back into the local economy (as the recovered patient goes on to meaningfully contribute to their society and lead a full, productive life). The economic output of a single cleft surgery is as high as 200 times the input.
In some West African countries, there are cases of unreported infanticide of cleft kids. How is Smile Train strengthening the advocacy?
As typical of Africans, we have deeply entrenched cultural beliefs and superstitions. Recall the killing of twins or multiple births before the missionary, Mary Slessor, helped to de-mystify it. We can say it is almost similar with cleft. It varies from region to region. In Yoruba culture, a pregnant woman is advised not to go out at night so that evil spirit does not possess the unborn baby, or she should attach a safety pin to her dress. Some would say child is born with cleft because the mother sighted the moon or solar power at a wrong time. Some attribute it to ancestral curse to his or her family and the pressure on parents often leads to divorce or the banishment of the family from the village. Most often, these children are branded as witches, and often forced to live as outcast. They are labelled evil spirit, seen as product of infidelity or past wayward activities on the part of their mothers. Some believe it is a punishment from God, while others especially in northern Nigeria take it as a gift from God for alms begging on the streets to generate income to sustain the family. The list is endless but it doesn’t rule out that fact that if the cleft is unrepaired, these children will lead lives filled with shame and isolation, pain, and heartache. Those affected may not live past their first birthday, will have difficulty eating, speaking and breathing.
Therefore, at Smile Train, we have strengthened our advocacy by initiating the Cleft Awareness Week. The aim is to have partners institutionalise a week in their calendar annually dedicated to creating awareness about the programme in any targeted community. When I visited many communities with many cultural sensitive issues and social hierarchy, I discovered that some still stigmatise cleft families, reject and even kill cleft babies. Meanwhile, the solution is right at their door step. The cleft week affords the community to take total ownership of the programme – information is power. During the cleft week, there are public enlightenment activities aimed at educating the populace and correcting the wrong perception of cleft. Cleft is not a curse or a bad omen. Cleft patients are not witches or demons and should not be stigmatised. We have health talks on all available media platforms – radio, TV and of course, the social media. Handbills and posters of pre- and post-operation photos of patients are distributed. This is to show that cleft can be easily corrected and the person can live a meaningful life. This initiative has proven to be a catalyst for the programme’s growth in the region.
We also have another advocacy initiative called ‘First Lady Initiative’. We try to put the face of the mother to the problem. Usually, when a woman gives birth to a cleft child, she is all alone and abandoned. We have engaged community leaders and influencers to support the programme and advocate for the care of the cleft child. They are very important to the success of our program. And we have received tremendous support thus far. About 70 per cent of our governors’ wives in Nigeria are Smile Train ambassadors. Recently, we’ve also signed on the MBGN Universe Nigeria – Debbie Collis, as one of our goodwill ambassadors. She has been active on a door-to-door advocacy and her One Smile Campaign. The message remains: No child should be killed because of cleft. Please when you come across any person with cleft, kindly refer them to any Smile Train local partner hospital. In Nigeria, we have partners and surgeons in all the 36 states and the FCT, Abuja. In West Africa and Central Africa, we have our programme running actively in these countries: Benin, Burkina Faso, Cameroun, Cape Verde, Central Africa Republic (CAR), Chad, Cote d’Ivoire, Equatorial Guinea, Gabon, The Gambia, Ghana, Guinea, Liberia, Mali, Mauritania, Niger, Nigeria, Republic of Congo, Senegal, Sierra Leone, and Togo.
Where do you see cleft care in the near future?
In addition to our dedication to safety and quality by offering a multitude of cleft education and training programmes and resources, Smile Train is also committed to ensuring that the care we are providing is comprehensive. Many may not realise this, but children born with clefts need more than just one surgery, and our local medical professionals evaluate whether or not additional nutritional, speech, dental, orthodontic, and therapeutic care is needed. Where these services are available, we do everything we can to provide our patients with access to them. Our vision of a cleft-free nation is to have a robust medical infrastructure and personnel easily and readily accessible to as many cleft patients especially young children who if early treated, can begin a great future without having to deal with all the stigma associated with cleft and live to contribute productively as members of their communities (and also to adults to give them a second chance to at life to smile. Together, we can make sure every child in our region born with cleft is given an opportunity to live productive life.