Children born with congenital heart disease (CHD) across Africa face a double burden of delayed treatment and crushing financial pressure on their families, a new investigation has found.
The research, published in the Egyptian Pediatric Association Gazette, warns that limited specialist services, inadequate infrastructure, high out-of-pocket costs and poor access to early diagnosis continue to put children with heart defects at risk.
Two renowned Nigerian researchers, Chidera Stanley Anthony and Victor Oluwatomiwa Ajekiigbe, led others to research studies from Ethiopia, South Africa, Nigeria, Tanzania, Egypt and Ghana to examine the socioeconomic impact of CHD and identify strategies for improving care.
CHD affects about nine in every 1,000 births globally, equivalent to an estimated 1.35 million affected infants each year. However, the true burden in Africa is likely higher because many cases go undetected or are inadequately reported.
The study found that while children with CHD in high-income countries can achieve survival rates of about 85 per cent because of early diagnosis and timely surgery, many African children continue to face delayed diagnosis and limited access to specialised treatment.
The cost of care emerged as one of the most serious challenges. Families often have to pay for echocardiography, hospitalisation, medicines, surgery, transportation and accommodation.
In Nigeria, studies reported substantial out-of-pocket expenditure, with some families facing costs that exceeded their income. In Egypt, 70 per cent of parents surveyed reported financial difficulties linked to their child’s heart condition.
The burden can also force parents to reduce working hours or leave employment altogether to care for their children, further reducing household income.
It was also found that children from poorer and rural households face additional barriers to treatment across several African countries.
In Tanzania, children who underwent surgery were more likely to come from families with better socioeconomic circumstances and easier access to healthcare facilities. Rural families often face transport costs, limited awareness, and a shortage of surgical services.
In Ethiopia, some children reportedly waited more than a year for treatment, while some Ugandan children had to travel abroad to obtain specialised cardiac care.
The burden is not only financial. Parents, particularly mothers, may experience anxiety, depression, stress, and social isolation. Misconceptions and cultural beliefs can also fuel stigma, with some families attributing CHD to supernatural causes.
Children may miss school because of repeated hospital visits, fatigue, or physical limitations, while siblings may receive less attention as families focus on the child with the heart defect.
The researchers identified early detection as a critical opportunity to improve outcomes, noting that pulse oximetry screening for newborns, already used in many high-income countries to detect critical heart defects, remains limited across Africa.
The study also recommended training nurses and other non-specialists to carry out focused cardiac assessments, particularly in communities where specialist services are scarce.
Cardiac surgery missions and international partnerships have helped provide treatment while training local health workers. Programmes in Kenya, Nigeria, Cameroon and Tanzania were cited as examples.
The study also highlighted institutions such as Ghana’s National Cardiothoracic Centre and South Africa’s Walter Sisulu Pediatric Cardiac Centre as examples of efforts to strengthen local capacity. Nigerian programmes involving LASUTH and Open Heart International were similarly cited.
But the researchers warned that such initiatives cannot meet Africa’s needs on their own.
They called for national CHD registries, routine newborn screening, stronger referral systems and increased investment in specialist training and cardiac facilities.
They also urged governments to make treatment more affordable and involve community, religious and cultural leaders in awareness campaigns to reduce stigma and encourage earlier care-seeking.
Dr Chidera Stanley Anthony and Dr Victor Oluwatomiwa Ajekiigbe stressed that congenital heart disease in Africa is not simply a medical problem, but also a financial, social and health-system crisis.
They argued that Africa must move beyond isolated cardiac missions towards sustainable systems capable of detecting heart defects early, providing affordable treatment and following children throughout their lives.
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