Cleft lip and palate leaves children with difficulty in eating, breathing, speaking, even hearing, apart from disposing them to infections as well. Nkeiruka Obi, Programme Director, Smile Train, which has funded and equipped corrective surgeries in Southeast and other parts of the country and West Africa, in this interview, throws more light on the organisation’s campaign to spare children the agony of the condition. Excerpts:
‘Our No.1 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’
What is your assessment of Smile Train’s activities in Nigeria and West Africa?
Smile Train System architecture anchors on four pillars: medical, technology, donors and programmes which revolve around financial help to poor patients who cannot afford the surgery and training of medical professionals to upgrade 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 become self-sufficient.
Smile 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% 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.
On initial challenges and how they were resolved
The West and Central Africa region is a diverse multicultural territory with an estimated 390m+ 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 health care, 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 African 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 organize trainings for them so as to re-inforce the scientific foundations of cleft surgery and provide them hands-on training in surgical techniques. There has been significant progress in this area.
Then, there was the challenge of infrastructure and equipment. Most hospitals have very poorly equipped operating theatres. And our number one priority in cleft care is ensuring the safety of the patient. Smile Train have had to provide 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.
We also have issue 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.
As you well know, cleft deformity comes with a lot of psychosocial problems. Many cleft children 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.
Can this deformity be detected before birth in order to tackle it immediately after?
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 4-6 weeks of gestation while the palate develops between 6-12 weeks. The upper lip develops from the fusion of two different process. Failure of fusion results in cleft.
Why does Cleft occur?
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. 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 cost as little as $250 and takes as a little as 45minutes.
What has been the success rate of the surgeries?
Like any other surgery, there are risks involved. At Smile Train, we have had very good success rate and near zero mortality rates. to ensure patients receive the highest level of care possible. If a child has a cleft, he/she can live with that defect for the rest of his/her life. The only thing is that the child may not enjoy life to the fullest like a normal person.
It is important to note that since 1999, Smile Train has performed 1,000,000+ (still counting) free, safe and high quality surgeries in more than 85 countries.
Where to 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 go on to live and 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.