Tackling congenital heart disease in Pakistan

Three-year effort to support CHD patients raised over Rs 247 million from various partners

KARACHI: Born with Tetralogy of Fallot, a rare and complex congenital heart defect, Shahmeer Khan had a combination of four heart defects.

A congenital heart defect, it is often called the “blue baby syndrome” because it causes the skin to turn bluish in colour as a result of deoxygenated blood in the baby’s system. Congenital Heart Disease (CHD) is one of the most common developmental defects, occurring in one per cent of the population world-wide.

All babies who have Tetralogy of Fallot need corrective surgery. Without treatment, the child might not grow and develop properly. Untreated cases usually develop severe complications over time, which might result in death or disability by early adulthood.



Shahmeer is among the growing ranks of children born with CHD, who are surviving, thanks to life-saving pediatric cardiology programmes such as the one at the Aga Khan University in Karachi.

“Life is a gift and due to some very specially trained people and people who take what they do seriously. Thanks to advances in treatment and care at AKUH, by the grace of the almighty, my child is still here and doing very well,” Shahmeer's mother said.

Shahmeer was celebrating the success of his life-saving open heart surgery at AKUH with sponsors of the University’s Mending Kids’ Hearts campaign. Supporters of the campaign came together over a game of golf and to learn about the impact of their gift.

The three-year effort to support CHD patients has raised over Rs247 million from community partners, local corporations, private individuals and support from AKUH’s income allocated for welfare to offer enhanced services to the children in Pakistan.



Each year, the congenital cardiac programme team at AKUH performs more than 400 paediatric cardiac procedures, especially for miracle children like Shahmeer whose families could not afford the cost of these complex procedures.

“Seeing the level of support Aga Khan University Hospital provided to us in our scariest and darkest hours makes me want to make a difference in the lives of other families facing the tough road,” said Shahmeer's father.

"Increasing access to pediatric cardiac care is not an impossible goal. It is an achievable goal. AKUH remains committed to the well-being of our children," said Mr Hans Kedzierski, CEO, AKUH.

Since the turn of the millennium, child deaths in Pakistan have been declining thanks to improved public health and poverty reduction efforts. More children need to be saved by 2030, the year that the UN Sustainable Development Goals call for the world to end preventable child deaths. “This target will not be met without addressing congenital heart disease, and we need to assist CHD patients who cannot afford this care” said Dr Muneer Amanullah, an associate professor of cardio-thoracic surgery.