8,000 babies in Uganda may need heart surgery every year
Omagino said the new Uganda Heart Institute hospital, which is under construction, is expected to significantly improve the country's capacity to manage cardiovascular conditions and position Uganda as a destination for specialised medical treatment.
John Odiri Ogund Omagino (second right), Executive Director, Uganda Heart Institute and Judith Namuyonya, Senior Consultant Pediatric Cardiologist at Uganda Heart Institute, showing Ronald Nsubuga Balimwezo (left), Lord Mayor of Kampala, the Heart-lung Machine during the World Heart Day celebration at Kololo Independence Grounds on November 6, 2026. (Photos by Mary Kansiime)
________________
Siama Nasirori and her husband, John Madise, live in Bugiri District in eastern Uganda. In 2016, they welcomed a baby boy who was diagnosed with a congenital heart defect and Down syndrome.
Four years later, the child died as the family was preparing for him to undergo surgery.
Siama later gave birth to a healthy baby girl. But in 2021, she became pregnant again and delivered a boy, Josiah.
When Josiah was 11 months old, he began experiencing serious health complications. He struggled to breathe and feed, leaving his parents increasingly worried about his condition.
“At 11 months, he could hardly breathe. We took him to Whispers in Jinja, where we were advised to see a specialist. When the hospital tried to contact Dr Tenywa, he said he was away but advised that, in case of an emergency, we should take the baby to the Uganda Heart Institute at Mulago,” Siama recalls.
As Josiah's condition worsened, the family rushed him to the Uganda Heart Institute (UHI) in Kampala.
“Whenever he became upset or cried, his lips would turn purple, and he would struggle to breathe. We arrived at the hospital on a Saturday, and the following day, doctors examined him and diagnosed him with a hole in the heart,” she says.
For Siama, watching her son struggle to breathe was an agonising experience.
He would cry and appear to be on the verge of losing consciousness. As a mother, she said, it was heartbreaking to watch him suffer, never knowing whether he would recover or return to his normal state.
At 11 months, doctors advised that Josiah needed surgery, although the family was initially told to wait until he turned two.
When they returned to Jinja, Siama updated Dr Tenywa about the baby's condition. But the doctor emphasised that Josiah could not wait any longer and needed an operation.
“He told me that I could not manage the baby's condition at home because he needed an operation. He immediately contacted Dr Oketcho, who said the doctors at Mulago could operate on him,” she recalls.
Around April, the family received further communication about the possibility of surgery. In June, they learnt of a major surgical camp for children with heart conditions and were advised to bring Josiah.
But despite being taken to the operating theatre, Josiah did not undergo surgery.
“They even took him to the theatre but later brought him back. They told me, ‘Mama, we are not going to operate on this boy.’ I felt disappointed because all I wanted was for my son to get help,” Siama says.
The family was advised to return home and wait for another appointment.
Between June and July, however, Josiah's condition continued to deteriorate.
(L-R) Siama Nasirori and John Madise Parents handing over Josiah Esegu a 3yrs to Henry Ddungu Member Board of Director at Uganda Heart Institute, Charles Oyoo Akiya Commissioner NDC Prevention and Control at Ministry of Health, Judith Namuyonya Senior Consultant Pediatric Cardiologist at Uganda Health Institute, Charles Ayume State Minister for Health (primary health care) and John Odiri Ogund Omagino Executive Director Uganda Heart Institute with another heart condition saviors pose for group pictures during the world heart day celebration at Kololo Independence grounds on November 6, 2026.
Eventually, the family received the news they had been hoping for.
“Today, we thank God because Josiah finally underwent surgery in July 2024. Doctors first inserted a temporary pacemaker, and we waited until September 10, when a permanent pacemaker was implanted,” she says.
Today, Josiah attends baby class, and his health has improved considerably.
“He can now walk and talk,” Siama says.
The burden of heart disease among children
Josiah's experience reflects a wider challenge facing Uganda's health system: the growing number of children who need specialised cardiac care.
The Uganda Heart Institute is expanding its capacity to perform heart surgeries and taking services closer to patients through outreach programmes at regional hospitals.
Its executive director, Dr John Omagino, said the institute currently performs at least eight open-heart surgeries and nearly 10 closed-heart surgeries every week.
“We are doing at least eight open-heart surgeries and almost 10 closed-heart surgeries every week. We are also extending these services to regional hospitals,” Omagino said.
He said Uganda needed to prepare for approximately 8,000 babies requiring heart surgery every year.
In the past, limited surgical capacity had left the institute struggling with long waiting lists. At one point, as many as 500 children were waiting for surgery.
The situation has since improved, with the institute conducting operations routinely and extending services to regional facilities.
“We have been to Mbarara, Jinja and Lira to perform these operations and prevent patients from having to travel to the centre,” he said.
Omagino identified congenital heart disease — conditions present at birth — as the biggest burden among young patients.
Uganda records approximately 1.6 million births annually, and about 1 per cent of babies are born with congenital heart defects. This translates into roughly 16,000 children each year.
Beyond congenital conditions, school-going children also face the burden of rheumatic heart disease, which can develop following untreated or inadequately treated throat infections caused by streptococcal bacteria. Overcrowding can increase the risk of infections spreading among children.
New hospital to expand surgical capacity
Omagino said the new Uganda Heart Institute hospital, which is under construction, is expected to significantly improve the country's capacity to manage cardiovascular conditions and position Uganda as a destination for specialised medical treatment.
“Construction has reached 75%, and hopefully next year we should be able to roll in most of those things,” he said.
The expansion is also expected to reduce the cost of seeking treatment abroad, where patients often face substantial medical bills and travel expenses.
Omagino said a heart procedure that costs at least $20,000 (about Shs80 million) abroad could be performed in Uganda for approximately $5,000 (about Shs20 million).
He estimated that the institute's expanded capacity could save Uganda approximately $75 million annually by reducing the number of patients referred abroad for treatment.
Beyond treatment, the new facility is expected to strengthen medical training, research and specialised patient care, while attracting patients from other countries in the region.
Rising burden of heart disease among adults
While congenital conditions remain a major concern among children, Omagino also raised alarm over the increasing prevalence of hypertension and other cardiovascular diseases among adults.
These include coronary heart disease, heart attacks and strokes.
He said approximately one in four adults in Uganda has high blood pressure, but 85 per cent of those affected are unaware of their condition because hypertension often presents no obvious symptoms.
He described the situation as a growing public health challenge that requires a coordinated national response.
Speaking during World Heart Day celebrations at Kololo Ceremonial Grounds, the State Minister for Primary Health Care, Dr Charles Ayume, urged Ugandans to adopt healthier lifestyles to reduce the burden of cardiovascular diseases.
Ayume emphasised the need to address preventable risk factors, including smoking and obesity. He said individuals had a responsibility to make healthier lifestyle choices to reduce pressure on the health system.
Such efforts, he said, would help the government reduce expenditure on preventable conditions and direct more resources towards congenital heart conditions and other diseases that people cannot easily prevent.
He urged Ugandans to take greater responsibility for their health as part of the wider national effort to combat heart disease.
Omagino also called for more opportunities for physical exercise at home and in schools, arguing that playgrounds should be a compulsory requirement for all schools.
“Physical exercise is not a choice. It helps people grow to their full capacity and burn off excess energy. It should not be treated merely as a sporting competition but as an important part of maintaining good health,” he said.
He urged schools to provide adequate space for physical activities, warning that denying children opportunities to exercise could affect their physical development and overall well-being.
Kampala Lord Mayor Ronald Nsubuga Balimwezo also called for the establishment of open spaces where young people could exercise.
He expressed concern that many public open spaces had been sold off by leaders, leaving residents with few places to engage in physical activities, which he described as an important way of combating obesity.