Joey’s drive for a cleft free Malawi

In Malawi, Operation Smile aims to find and treat all children and adults living with untreated cleft conditions, so they can live more fulfilling lives.  To reach this ambitious objective, we are working with the Kentown Wizard Foundation, the Ministry of Health and our hospital partners. 

Joey Mdumuka is the National Patient Coordinator for our team in Malawi. He works tirelessly to develop community outreach strategies which best suit the context of the country and to help the team of community volunteers spread awareness on cleft conditions. 

Joey is also in charge of setting up systems that enable the organisation to capture patient data, so they can understand better the need of each region and build programme activities that meet the requests for surgical and comprehensive care.  He explains: 

“In Malawi, we do face challenges when it comes to cleft care, but also health care in general. For patients to access information and to go with it all the way to see a surgeon is not easy, there are several stubborn blocks that they usually face along the way. 

My job pretty much focuses on making sure that we clear out all those stubborn blocks, so that every patient is aware of the services and can access them.” 

One of the crucial elements to make sure that Operation Smile can reach patients and provide the best care, is the team that Joey leads – he says, “As National Patient Coordinator, I work with a team of 3 regional patient coordinators and a team of about 300 community volunteers and patient ambassadors, spread across the whole nation to make sure that we reach out to all the facilities in Malawi.” This team is focused in finding patients, but also in creating awareness in the community. Awareness campaigns include meetings and the distribution of posters, leaflets, and other materials in public spaces, such as clinics, community health facilities, schools, markets and religious places. The team then registers new patients, so they can receive care as soon as possible.  

Joey also works with the team on the ground to identify the biggest barriers to care for our patients and provide solutions. He explains: 
 

“At the moment the biggest barrier to care for our patients is the availability of cleft surgery. Currently, we’ve got two hospital partners that are continuously providing cleft surgeries to our patients, one in the central region and one in the southern region. We do plan other surgical programmes across the year, but we’ve got only these two partners that can provide ongoing surgical care.  When we find a patient in the northern region, we feel frustrated, because the only way they can receive timely surgical care is for them to travel to another region or to wait for a short-term surgical programme there.”

These challenges require more work with the Ministry of Health and hospital partners to ensure that Operation Smile can provide surgical and comprehensive care closer to our patients and their communities. Joey says: 

“Here there are several gaps in the health sector. As Operation Smile, we are working with the Malawi government on training programmes, so that we can empower the existing structures to provide quality care to wider communities. We want to train even more surgeons, nutritionists, anaesthetists and other health personnel to make sure that even without Operation Smile, new smiles can still be created.” 

Joey joined Operation Smile in 2017 as a volunteer Patient Coordinator and in 2018 he became National Patient Coordinator. In these years he has met countless patients, but the feeling of seeing a patient receiving surgical care after the challenges they have faced is his biggest motivation.  He tells us: 

“There is no word that I can use to describe the feeling. It’s that feeling of satisfaction. It’s that feeling of feeling, like you’ve got some purpose in life. When you see another patient who was unable to get surgery just because they were afraid. I’ve had scenarios whereby the patient goes into theatre, and then when they come out, the first thing they said is ‘Finally, I will get married. Finally, I will be able to get a wife or get a girlfriend!’ 
Hearing something like that, it’s the most satisfying feeling because you’d imagine one living without being able to find love, which is the very most basic thing that we are supposed to have. But some are unable to get that because they had a cleft. Looking at another patient going through surgery, and then getting that complete smile, it goes beyond that smile. It changes the whole life of that person, brings opportunities in life, it opens all those doors that were closed because of their condition. I can’t find a proper way to measure that kind of satisfaction, but I would say it’s the fuel that keeps us going.” 

Joey Mdumuka, National Patient Coordinator

Joey’s hopes for the future are both clear and ambitious – to provide excellent cleft surgeries and comprehensive care to Malawians all year round. He tells us, “For Operation Smile Malawi, I hope that the foundation continues to provide quality, timely and safe cleft care to children. I also hope that we will be able to establish our own cleft centre. A centre which can be able to look after all the needs that children with cleft have, from the moment they are born. A patient with a cleft condition needs more than a surgical repair, they may need nutrition, speech therapy, dental and orthodontic care. I do hope that in the future we will have a place where a patient with a cleft can always walk in and be assisted for any needs.”