Every patient with a cleft condition who receives corrective surgery through the Operation Smile programme holds a place in our hearts. But none more so than 8-year-old Kayol Carlos, from Chimoio in Mozambique. This bright little boy is truly special – and so is his story.
Kayol was born with a severe craniofacial complex bilateral cleft lip and palate. Although shocked by his appearance, his parents, Regino and Paciência were assured by doctors that his condition was not unique and that surgery was possible. They were given a letter to take to the hospital in Beira and, a week later, they went there with their baby.
Kayol’s story is one of waiting and hoping
After waiting hopefully for hours in the queue, they were told Kayol could not have the operation; there weren’t enough doctors or equipment.
Back home, the family faced significant pressure and stigma from their community. There were rumours of witchraft and curses, with some people even going as far as to suggest that Paciência should kill the baby. Others insisted that Kayol must undergo a ritual. But Regino is a Christian who doesn’t believe in rituals. “God gave us this child,” he says. “We love him.”
Regino knew that what Kayol needed was specialist surgery – almost impossible given their financial situation. These are humble people, with two other children to provide for on the small income Regino earns selling snacks and sweets.
Kayol’s scan shows the severity of his cleft.
Time and again, the family travelled the 200km to the hospital in Beira to consult with specialist doctors – always with the same outcome. Kayol needed complex surgery, which simply wasn’t available.
Operation Smile Surgical Programme
Hope flared again in 2018, when the family was referred to an Operation Smile Surgical Programme in Quelimane. But the outcome was the same. No one in the country was equipped to provide such specialised surgery. Again the family returned home disappointed. Then came the Covid pandemic in 2020, and everything stopped. All hope was gone.
“We used to feel so bad,” Regino said. “But there was nothing we could do except face the situation.”
Spirit of a great heart
In this, Kayol led the way. He knows he’s different, but he doesn’t let that stop him from living a normal life. Such amazing spirit and strength of character in a young boy. When his parents decided not to send him to school for fear he would be bullied, he insisted on going.
“My sister is going to school,” he said, “When can I go? I know how to count up to 20.” So off to school he went. When other kids stared at him, he would ask them outright, “Why are you looking at me? What do you want?” He made friends and enjoyed playing football with them.
But every now and then he would ask his father, “Am I going to be okay one day?”
Operation Smile World Care Programme
Late last year, Kayol’s doctor contacted Regino to tell him that his son was eligible for Operation Smile’s World Care Programme. This programme facilitates surgeries for patients identified in Operation Smile’s countries of operation who cannot be treated during a standard surgical programme owing to the complexity of their cases. After a further round of examinations by the Operation Smile team, the family got the news they had waited years to hear:
“Following approval by the South African Minister of Health, Kayol Regino (8 years) from Mozambique has been confirmed to receive surgery in South Africa at Inkosi Albert Luthuli Hospital by Professor Anil Madaree on 17 July 2024. Operation Smile is collaborating with the Clinton Health Access Initiative (CHAI) in Mozambique, who reached out last year requesting assistance for Kayol, following a request to them from the Mozambique Ministry of Health.”
Operation Smile and CHAI worked closely to put in place all the necessary logistics including passport, visas, transport, accommodation and meals.
A reassuring hug from dad before entering the hospital.
Surgery at last
Kayol and his dad arrived in Durban late Sunday 7 July, filled with excitement and optimism. They were welcomed by Operation Smile volunteer caregiver Marlise van der Merwe and her daughter Donné, who was born with a cleft lip and palate. As a teenager Donné became an advocate for the organisation through Operation Smile’s Student Programmes. They helped reassure and comfort Regino by sharing pictures of Donné as a baby and her transformation after multiple surgeries.
In the days leading up to the surgery, Operation Smile’s Medical Director Prof Anil Madaree, who is one of the world’s leading Plastics, Reconstructive and Craniofacial surgeons, explained that surgery involved reconstructing the eye and nasal bones by cutting some bone from the child’s head. He also stressed that Kayol would need other operations … this was just the first. But nothing could dim the excitement. Kayol was wheeled into the operating theatre just after 8am on 17 July for surgery lasting around nine hours.
Knowledge and skills transference
In line with Operation Smile’s mission, the surgery included a strong education and training component. Observers included two maxillo facial surgeons from Mozambique, Dr Saraiva Simao and Dr Nadia Velic, two plastic surgery registrars, two anaesthesia registrars and a 5th year medical student.
After surgery, they could hardly contain their excitement at what they had been exposed to and learnt. All were so grateful for the opportunity and hungry for more!
A father’s joy
Without doubt the highlight was when Kayol’s father, Regino (who persevered for so long and never gave up hope) saw his son in ICU. This quiet, unassuming young father from a very humble home was just beaming and overcome with joy! Photos sent to Paciência back home in Mozambique met with the disbelieving response: “That’s not my child!”
As for Kayol, he wants to change his name, “because I’m not Kayol anymore.” When asked what new name he wanted, after some consideration, he declared, “Macaroni.” It seems the last meal he ate as the ‘old’ Kayol in hospital before his surgery, was pasta with sauce and meat, and this marked the turning point in his life.
In six months’ time, we’ll add to Kayol’s story when he undergoes further surgery in Mozambique, to improve the appearance of his right eyelid and the right side of his nose. For now, it’s homeward bound for the little boy and his dad, and the last word belongs to Kayol.
We asked him what he thought his mother would say when she saw him. He said simply, she’ll say, “I love you.”
FOOTNOTE: Stories like this are made possible through the generous donations of individuals, companies and others who just want to make a difference. Please consider joining in to help us help more children.
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