New Smiles in Malawi
Chris Williams, OSUK Fundraising Manager, recently visited an Operation Smile Medical Mission to Zomba, Malawi - read how this experience impacted him:
Each year, Operation Smile conducts hundreds of medical missions in more than 60 locations around the world. In August 2017 I joined the team on a mission to Zomba, Malawi, where over 50 medical professionals volunteered to bring safe, effective and timely surgical care to adults and children with untreated cleft lip and cleft palate conditions. I was able to see first-hand each step of Operation Smile’s vision and how the generosity I see in my everyday work is impacting those most in need around the world.
Zomba Plateau, Malawi
As someone affected by cleft first hand, this mission resonated very deeply with me. I hope this blog brings you a personal snapshot of the real impact Operation Smile has for those living with, and impacted by, untreated cleft conditions around the world and inspires you to get involved.
As I prepared to depart for Operation Smile’s 7th medical mission in Malawi, it was a shock for me to learn that there is so much stigma surrounding children and adults born with cleft conditions in the country – the majority of children affected by the condition are hidden away for fear of recrimination from their own communities. With the culture of blame still on the mother, education programmes as well as surgical missions are integral to Operation Smile’s work in dispelling these myths and increasing the ability to find and treat adults and children living with cleft in these rural areas.
As I arrived in Zomba, it was quite the view! More than 50 international volunteers arrived with boxes of equipment, supplies, toys, feeding bottles, teats and, of course, their own luggage! You would think that amount of ‘stuff’ wouldn’t fit in a 15 man bus and a jeep – but it did! After strapping everything to the roof – we were off!
After a long ascent to the Zomba Plateau, we reached our accommodation. We found our rooms, met our room mates and prepared for the pre-screening meeting – this entailed a short briefing on the screening process, nutrition programme, working with the Ministry of Health (MoH) on creating a Cleft Registry and the continued training and education of local medical staff. I was itching to get started!
The mission took place at Zomba Hospital. A tired, single story building surrounded by dirt tracks with the mild scent of urine. The interior was sad - with its grey floors, rusty beds and raw wooden benches - it gave a glimpse into the current state of Malawi’s health care system. Working with the MoH, Operation Smile had secured 4 rooms that would eventually become the pre-op ward, post-op ward, operating room (OR) and recovery.
Screening was a hive of activity with every person working to the max! It was amazing to witness people from a wide variety of different backgrounds, languages and faiths working together seamlessly. It took several days with each patient visiting a number of different stations; including medical records, the photo imaging technician (PIT), patient evaluation, speech therapists and nutrition. Nutrition and general health was crucial.
The ability to perform surgery (including cleft surgery) is directly linked with a child’s nutritional status. In Malawi, 48% of children under 5 years, including those with a cleft, are estimated to be chronically malnourished and nearly a quarter of those die as a result of malnutrition. Operation Smile’s Nutrition Programme is a key focus in Malawi – the Operation Smile Malawi team organise and implement training with midwives and paediatricians to educate them on feeding techniques for children born with a cleft condition.
During the mission, patients were hosted at the nearby Mulunguzi Secondary School, where they were provided with free transport, free accommodation and free meals for the duration of the mission. Operation Smile refuses to accept inequitable access to quality surgical care.
Bus after bus of patients arrived at Zomba Hospital for screening – it was quite overwhelming. Some of them had been travelling for over 13 hours. I have never seen so many people with the same condition as me – let alone untreated. Operation Smile estimates that there are approximately 2,350 children and adults living with an un-repaired cleft in Malawi – and only FOUR surgeons who can perform cleft surgery in the whole country – there are just no words… To help combat this lack of resources, Operation Smile conduct education and training on every mission. Each year, training in cleft surgery, anaesthesia, nursing and speech therapy are offered throughout Malawi.
In addition to this specialised training, Operation Smile Malawi have partnered with the Ministry of Health to implement American Heart Association (AHA) life support courses for volunteers and district hospital health workers. This is integral to Operation Smile’s long term aim to increase the ability of the healthcare system to provide cleft care themselves. More than 50% of medical volunteers came from in-country during the mission in August 2017 – this was a monumental development for Malawi.
During screening, I was able to observe the many talks and workshops provided at the patient shelter. Here we worked with other NGOs to provide training sessions on family planning, nutrition and sanitation. I sat with a number of individual patients and their families learning about their experiences. I sat – lost for words.
Too many parents don’t know where to get help – they don’t know how to breastfeed or take care of their child with a cleft condition. They are forced to choose which of their children gets food, which child gets to grow stronger and go to school, which one gets to survive.
The tragic truth is that 93% of those born with a cleft condition will die from malnourishment or other associated complications before reaching adulthood. Those who do survive may suffer difficulty eating or speaking and are vulnerable to negative attitudes and severe marginalisation.
Akonile (70), Patient Shelter
It was here I met 70 year old Akonile - born with a severe unilateral cleft lip. Due to the stigma attached to such a condition, Akonile had not spoken to anyone outside her family in nearly 17 years. Shunned from her community and described as a witch, Akonile had experienced severe social isolation and marginalisation for her entire life.
As I caught her eye from a far, I knew I needed to at least try to comfort her. With that I grabbed the nearest translator and started talking. Fatima, Akonile’s daughter, heard about Operation Smile at their local hospital – learning that her mother’s condition was repairable, she persuaded her mother to attend an Operation Smile mission. I could feel that Akonile was hesitant – she had lived with this for over 70 years.
Akonile (70), Screening
As I spoke to her, I could see the curiosity in her eyes - glancing at my lip - wondering. It was in that moment I took out my phone, found my baby photo and passed it to her. She stared at the picture – her expression seemed to change. Her eyes widened in disbelief, with hand gestures to suggest… ‘who is that?’. I pointed at my lip and said ‘this was me, and it will be you too’. She looked at me and smiled – she stretched out her hand and placed it in mine. The translator then said ‘Akonile says thank you – thank you for giving me hope’. It was undoubtedly one of the best and most emotional experiences of my life and the reason why I love what I do!
The medical team assessed over 190 patients during screening. A long evening followed. Each patient was marked on a priority system to determine who was eligible for surgery. Announcement day was full of anticipation. Patients had travelled for miles, taking many hours to reach Zomba – exhausted, tired, confused they sat patiently waiting for their result. Each patient was told individually if they were receiving surgery or not and the reasons for that decision. Those receiving surgery were given a date and instructions on how to prepare. Joyful faces filled the room.
This mission saw a large portion of adult patients scheduled for surgery as a significant number were unable to receive surgery due to different factors picked up in screening; including chest infections and malnutrition. A handful of patients were admitted immediately to the hospital with severe malnutrition and potential heart failure.
Advising patients that they were not to receive surgery was a difficult part of the medical mission for me - it was heart-breaking. Patients who were unable to receive surgery this mission were placed on the nutrition programme, referred for speech therapy and informed about the next mission. Trust is now integral to Operation Smile’s ability to work in communities and it ensure that patients return following disappointment.
Over 125 patients were scheduled for surgery by the Operation Smile team! Words cannot describe the atmosphere or the butterflies in my stomach when day 1 of surgery arrived! To watch the medical team work tirelessly for more than 14 hours each day, operating on more than 60 patients in the first 2 days alone, was just incredible. Their commitment, dedication and passion was inspiring!
Semitale (10), Screening
I was fortunate enough to follow 10 year old Semitale through his surgery. Semitale suffered from severe social discrimination. His peers shunned him and his mother, Violet, did not feel that she could send him to school knowing that he would be subjected to abuse. All he wanted was to fit in – play with other children, but they only stared and laughed.
Semitale was withdrawn. Finding it difficult to interact with others, I often saw him on his own with a blow up ball – throwing it at the wall and catching it as it bounced. Again and again.
When his name was called, Semitale met with the medical team and received a comprehensive medical evaluation to determine if he was healthy enough for surgery. After the assessment, they were excited to share the good news with Semitale and Violet – Semitale would be receiving cleft surgery during the medical mission!
Just a few days later, Semitale received the surgery he and his family have been dreaming about for so many years. Not recognising her son, his mother walked past him following surgery to another patient. I held her hand and walked her to Semitale who lay in the adjacent bed. In that moment she turned to me and gave 2 thumbs up with the widest smile – that’s all I needed to see – we had not only repaired his lip but also his future.
The generous donations and support given by supporters enabled Operation Smile to provide life-changing surgery to more than 130 children and adults. We estimate more than 2,350 children and adults living with unrepaired cleft in Malawi. Although Operation Smile was able to provide surgery for 130+ patients over the course of this mission, there were many that were unable to be operated on. Given the limited resources in Malawi, we can be certain that these patients represent only a small proportion of those still living with a cleft condition. It is imperative for Operation Smile to continue returning to Malawi.
Mike (19), Pre & Post Surgery