One hundred members of civil society came together over a game of golf to support the Aga Khan University (AKU)’s efforts in Mending Kids’ Hearts on Sunday.
About 60,000 children – one in every 100 infants born in Pakistan every year – are born with cardiovascular disease resulting in the deaths of many babies without any diagnosis.
The internationally reported incidence of congenital heart disease (CHD) is 8 to 10 per 1,000 live births. In Pakistan, since most births occur in villages, in
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remote areas or in ill-equipped basic health units, the true prevalence of CHD at birth is unknown as accurate data is not available. Lack of awareness and inadequate diagnostic and treatment facilities compound the problem as many Pakistani CHD patients do not survive beyond their first few years.
“Pakistan and three other countries India, China and Indonesia contribute to about 50 per cent of children with heart diseases in the world,” said Dr Muneer Amanullah, an associate professor of cardiothoracic surgery and interim associate dean of Postgraduate Medical Education at AKU. “About 15,000 to 20,000 of infants have critical problems and require a surgery or intervention in the first year of life.”
He noted that CHD occurs during the early stages of a mother’s pregnancy, when her baby’s heart is forming, affecting how blood flows through the heart and out to the rest of the body. Some anomalies can be prevented through vaccination, adequate intake of folic acid and iodine through foods or supplementation, and care during pregnancy.
Dr Amanullah addressed these issues to supporters of Mending Kids’ Hearts who had gathered for a fund-raising golf tournament held at the Karachi Golf Club. He said that many of the heart defects such as a small hole in the heart, or missing or poorly formed parts of the heart could be life threatening and contribute to long-term disability.
He explained that although congenital abnormalities may be the result of one or more factors – genetic (including children born of a consanguineous or close relative marriage), infectious, nutritional or environmental factors – it is often difficult to identify the exact causes.
Dr Amanullah commented that many CHD patients in Pakistan present late, when complications have already developed because of a delay in diagnosis, after a patient’s first few years, adding further to the mortality rate which is already high. If diagnosed and treated in time, children with these conditions can lead a normal life.
“This event wouldn't be possible without our generous community, volunteers, donors and sponsors,” said Mr Hans Kedzierski, CEO, AKUH. “There are only a few hospitals in Pakistan that are able to perform surgeries on these young patients, including infants whose hearts are the size of a strawberry. The Aga Khan University Hospital has created a place where CHD patients can find help and hope.”
Each year, the congenital cardiac programme team at AKUH performs more than 400 paediatric cardiac procedures. It is the only programme in the country to be both accredited by Joint Commission International (JCI) and recognised by the International Quality Improvement Collaborative (IQIC),” added Mr Kedzierski.
“Seventy per cent of CHD patients at AKUH come from families without the financial means to afford the cost of outstanding surgical and medical care,” said Mr Kedzierski. The Hospital’s Patient Welfare Programme has assisted over 2.25 million patient visits with Rs 9.5 billion disbursed since its inception in 1986.
“AKUH is dedicated to the principle that everyone deserves access to quality healthcare, regardless of their income. We are grateful for the support of our partners who are helping us to expand our paediatric cardiac services with an additional 100 CHD corrective surgeries this year,” he said.
AKU President Firoz Rasul noted that “women and child health programmes at AKU are part of the response from the world community to the UN's Sustainable Development Goals. The University has pledged to invest more than US$85 million over the next decade in support of the
global strategy that will act as a platform to put women, children and adolescents at the heart of the SDGs”.
“Recently, AKU has also partnered with the Bill & Melinda Gates Foundation. Under a five-year, US$25 million grant, the
Umeed-e-Nau or ‘a new hope’ programme, the University will work with the public sector to boost mother and child health in Pakistan,” he added.
