As Congenital Disease Awareness Week is observed, young Lisasa Pisani’s journey highlights the realities faced by children born with complex heart conditions.
Now 14, Lisasa has undergone five major heart surgeries in his battle against congenital heart disease.
Born in 2011 with pulmonary atresia and ventricular septal defect, he had a hole between the lower chambers of his heart and no natural connection between his heart and lungs, preventing proper oxygenation of his blood.
His mother, Thembeka Kona, has remained his pillar of strength throughout the surgeries and recovery. She admits the journey has been filled with fear and anxiety, but she has chosen to stay hopeful.
“It was terrifying handing my tiny baby over for surgery, but I had to be strong for him. I trusted the doctors, and I trusted God,” said Kona.
“When he was a baby, he didn’t understand anything, but as he has gotten older, he has started to understand what is going on inside his body. I have helped him understand that there is nothing wrong with him, it’s just that his body can’t do certain things the way other children’s bodies can.”
An estimated one in every 100 children are born with a congenital heart defect, yet awareness remains low unless families are personally affected
Lisasa’s surgeries began with a Blalock-Taussig shunt as a newborn, followed by a second shunt in 2012. In 2014 he had a Rastelli operation to close the hole in his heart and connect it to his lungs.
Later, in 2022, surgeons repaired a double chambered right ventricle, and in 2025, his right ventricular outflow tract was reconstructed for his adult-sized heart.
According to his mother, Lisasa is currently on a healing journey and is adjusting well to his treatments. Despite repeated hospital admissions and lengthy recoveries, the teen remains a respectful and understanding young boy who continues to do his best at school.
Early detection is key
An estimated one in every 100 children are born with a congenital heart defect, yet awareness remains low unless families are personally affected.
While early detection has improved outcomes in developed countries, South Africa continues to face late diagnoses, limited resources and a shortage of specialised surgeons. With only a small number of congenital heart disease specialists performing a few surgeries each week, access to life-saving care remains a serious challenge.
Paediatric cardiologist Dr Samkelo Jiyana, who was instrumental in Lisasa’s surgeries, is urging greater awareness of congenital heart disease, warning that too many South African children are diagnosed too late.
“Congenital heart disease is far more common than people realise. The tragedy is that many cases are picked up too late, particularly in resource-limited settings. Early diagnosis can make a life-changing difference,” he said.
When communities understand the signs and the urgency, children can be referred much sooner. With better screening and increased capacity, we can save many more young lives
— Dr Samkelo Jiyana, Paediatric cardiologist
“We simply do not have enough specialised surgeons to meet the need. That places immense pressure on the system.
“Awareness is the first step, because when communities understand the signs and the urgency, children can be referred much sooner. With better screening and increased capacity, we can save many more young lives.”
According to Life St George’s Hospital manager Reshma Vanmali, the hospital continues to strengthen its position as a leading centre for comprehensive cardiac care, offering specialised cardiology and cardiothoracic services for both paediatric and adult patients.
“We focus on every stage of cardiac care, from prevention and early detection to highly specialised surgical procedures,” said Vanmali.
“Our dedicated multidisciplinary team of super-specialists, supported by advanced equipment and specialised units, works collaboratively to ensure patients with congenital and other heart conditions receive exceptional care throughout their treatment journey and ongoing management.”
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