Drive to support children after heart surgery launched

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Many young patients continue to face life-threatening challenges long after successful surgery.

“Many people think once a child undergoes heart surgery, the journey ends there. In reality, the operation is only the beginning of recovery,” Healthy Heart Foundation co-founder Rita Namyalo Waggwa says.

She adds that after surgery, many children require repeat prescriptions, frequent medical reviews often every three months and, in some cases, emergency readmissions due to complications such as fluid build-up in the lungs or breathing difficulties.

“These children need close monitoring. It is a very difficult and expensive journey for parents to manage on their own,” she says.

It is for this reason that a fundraising drive to support children recovering from congenital heart surgery has been launched.  

Speaking at the launch of the Etendo Worship fundraising concert in Kampala on February 4, 2026, Waggwa said there is a widespread misconception that heart surgery marks the end of treatment for children born with heart defects.

Waggwa revealed that the foundation has, in the past, lost children after surgery, not because the operations failed, but due to a lack of funds for post-surgery care.

She cited cases where parents delayed returning children to the hospital because they could not afford transport or treatment costs.

“The initiative seeks to address the gap in post-surgical care, particularly for vulnerable families,” Waggwa said.

She added that with the financial and social challenges mothers often face, many are advised to stop working to care for their babies, leading to financial hardship, and in some cases, fathers abandon the family.

“There is also stigma in communities, with some people believing these children are cursed or victims of witchcraft. This makes it even harder for mothers to seek help,” she added.

According to paediatric heart specialist Dr Andrew Ssekitoleko from Nsambya Hospital, about 16,000 children are born each year in Uganda with congenital heart defects, with nearly half requiring surgery before six months of age.

Ssekitoleko said early detection remains a challenge, as some parents ignore symptoms in their newborns.

“Some children are born with hearts that have not fully developed. They may appear blue, breathe rapidly, have swollen limbs, or fail to grow normally,” he explained.

While maternal diabetes, infections during pregnancy, or alcohol use can increase risk, many cases have no clear cause, he added.

Heart surgery in Uganda costs about sh30 million per procedure, and with only one specialised centre capable of performing such operations, access remains limited.