During February’s local surgical programme in Malawi, the patients we met really highlighted the importance of raising awareness of cleft conditions, and challenging the stigma associated with cleft and surgery. Many people who live in remote communities aren’t aware that cleft conditions can be repaired, and many fear surgery because they believe it leads to death.

Living with untreated cleft conditions for years can mean a life of bullying and social isolation, while timely surgery and comprehensive care allows children to grow strong, confident and lead the full lives that everyone deserves.

Vailet and Izeki

Vailet and Izeki with their uncle, Rabson. Photo: Margherita Mirabella.
Vailet and Izeki with their uncle, Rabson. Photo: Margherita Mirabella.

Siblings Vailet and Izeki received their surgery at the age of 14 and 9 years old. They live in Zambia, on the border with Malawi, and in their community there is a strong belief that surgery can lead to death. Their parents were terrified by the idea of losing them, so they didn’t look for treatment.

Everything changed last November, when Vailet and Izeki’s uncle, Rabson, learnt about Operation Smile and understood that cleft surgery was not only free, but also safe. He took his nephews to an Operation Smile nutrition assessment where they were registered and Idah, the patient coordinator for their region, ensured that Rabson got all the details for the very first programme coming up in Mzuzu.

Here, both children were cleared for surgery and both got their new bright smiles. After hearing the good news from her brother, Vailet and Izeki’s mother came to Mzuzu to stay with her children for the remaining days. But the story doesn’t end here. Rabson was so moved by the care that Operation Smile provided to his nephews, that he decided to help raise awareness in his community, so anyone living with a cleft condition could receive timely and safe care from Operation Smile.

Mercy

Mercy and her mother. Photo: Margherita Mirabella
Mercy and her mother. Photo: Margherita Mirabella

Mercy is a happy and energetic 5 year old, born with a cleft lip and palate. She’s been enrolled in Operation Smile programmes since she was only a few months old, receiving her first surgery to repair her lip when she was 7 months old. Since then, she’s received further care, including a palate surgery and speech therapy.

Mercy was at the programme in Mzuzu because she needed a further palate operation to repair a fistula. Fistulas are a common complication for patients that receive cleft palate surgery, as sometimes the wounds don’t heal properly.

Anyone at the hospital could see Mercy’s confidence and happiness. She was often to be seen playing with other little patients before pre-op or entertaining volunteers even after her surgery.  Mercy wasn’t even scared to go to the OR, as she was familiar with the procedure and she bravely greeted the surgeons and the other volunteers while sitting on the operating table! Mercy’s mum remembers the bullying her family went through when Mercy was born, but she’s grateful that her daughter is now thriving and has a bright future.

Taonga

Taonga and his father before her surgery. Photo Margherita Mirabella
Taonga and her father before her surgery. Photo Margherita Mirabella

Looking at Taonga’s big, beautiful smile, you’d never guess what this 6 year old has been through. She lives with her father Kenneth and mother Misozi in a rural community on the border with Zambia. Kenneth and Misozi had never seen a cleft lip before Taonga was born and they didn’t know that surgery was an option.

In their local community there is a strong stigma associated with cleft and Taonga’s parents have even been accused of removing a part of her mouth for sacrifice.

This situation didn’t improve with time and Taonga has been constantly bullied and teased by other children in the community and at school.

Kenneth only learnt that surgery was possible a month before the programme, when he was in a business centre and a doctor approached him to explain that Taonga could receive free cleft care from Operation Smile. Before arriving at the programme, he thought he was the only one with a child with a cleft, but he was relieved to see other families in the same situation.

Kenneth couldn’t contain his joy when he learnt that Taonga was on the surgical schedule. As his daughter was going to theatre, he was understandably worried, but also excited to see Taonga’s new smile. The first thing he did after surgery was to call his wife to tell her the happy news – they can’t wait to celebrate together when they get back home.

Favour

Favour and her mother. Photo: Margherita Mirabella
Favour and her mother. Photo: Margherita Mirabella

Looking at mum Ellen’s big, bright smile, you can feel her relief now that she has finally reached care to repair her baby daughter’s cleft lip. When Favour was born, Ellen was extremely worried, as her older sister also had a baby with a cleft condition. Unfortunately, he passed away after a few months, because he was unable to breastfeed.

Ellen’s sister immediately introduced her to Operation Smile and when Favour was only a few months old, they attended an Operation Smile nutrition clinic, so Ellen made sure that Favour could grow strong and healthy.

When Frank, the programme coordinator, called her in January, Ellen couldn’t believe that the surgical programme was happening at their local hospital in Mzuzu, less than one hour by bicycle or taxi from where they lived.

At the programme site, Ellen was relieved to see all the other families, especially children with repaired cleft lips. She knew Favour was in good hands.  When she heard that Favour was on the schedule, she was incredibly happy and hopeful. After seeing Favour’s new smile, Ellen was smiling even more and everyone could feel the excitement. She couldn’t wait to go home to see the reaction of her older kids and her wider family, who have supported her the whole time.

Cecilia

Cecilia and her mother. Photo: Margherita Mirabella
Cecilia and her mother. Photo: Margherita Mirabella

Cecilia is a shy 7 year old. She was born at home and she surprised her parents, Iris and Chief, with a cleft lip. They have never seen a cleft before and they just accepted it, as they thought it was no one’s fault. It was only in January 2023 that Iris learnt that her daughter could receive free, safe surgery to repair her lip. Frank, Operation Smile Regional Patient coordinator, was travelling in the area looking for patients and some people told him to meet her. Iris and Chief couldn’t believe that the surgical care for her daughter was also free. After seeing Cecilia’s new smile, Iris couldn’t contain her joy and she sang and danced! She wasn’t the only one incredibly happy for Cecilia – Patient Coordinator Frank was also delighted about the outcome of the surgery, he said: “When I find patients that are older, I feel like I’ve really done something good. Seeing how happy they are when they receive the news and see their child’s new smile, it’s a drive to do more!”

Isaac

Community volunteer Alick and Isaac, before his life-changing surgery. Photo: Margherita Mirabella
Community volunteer Alick and Isaac, before his life-changing surgery. Photo: Margherita Mirabella

Isaac is shy boy whose story shows the importance of the role of community volunteers to challenge misconceptions around surgery. He has lived for 9 years with an untreated cleft lip, suffering from bullying and isolation as in his community there is a strong stigma associated with this condition.

Isaac’s parents learnt that surgery could repair his cleft when he was born, however, his mother was really against this option, as she believed that all surgeries lead to death.

Isaac’s aunt, Yasuzga, learnt about Operation Smile and realised that the surgery that could give Isaac a new smile was safe and free. So, she fought with his parents and became Isaac’s guardian. She immediately registered him with Operation Smile and couldn’t wait to take him to Mzuzu to receive surgery. They travelled to the programme site with community volunteer Alick and other families from their area.

In Mzuzu, Yasuzga was impressed by the care the volunteers gave to Isaac, in particular during the medical evaluation. When she learnt that Isaac was on the surgical list, she was delighted – she said Isaac hoped that friends back at school would now stop laughing at him.

After seeing Isaac’s new smile, Yasuzga called his mum and she couldn’t contain her joy, screaming and laughing on the phone. Yasuzga is convinced that Isaac’s story will help challenge misinformation and misconceptions about cleft conditions and surgery in their community.