Africa: 500,000 Children Are Born With Congenital Heart Disease in Africa. Where Are the Hospitals to Treat Them?

Each year, approximately 500,000 children in Africa are born with congenital heart disease (CHD), a condition that can often prove fatal if left untreated. In Tendai Moyo's case, her daughter Rudorwashe Grace was born in a Zimbabwean hospital and exhibited symptoms of serious illness, but her concerns were dismissed, leading to a six-month delay in diagnosis.

By the time she received a correct diagnosis, valuable time had passed, and she ultimately died at 10 months old. Tendai's story is far from unique, as CHD is one of the most common birth defects worldwide, affecting roughly one in every 50 newborns. In Africa, this means that 500,000 babies are born with damaged hearts each year.

Of these, at least a third will require critical treatment in their first year of life, with up to 85% of children with the most severe form of CHD dying if they do not receive timely care.

However, across Africa, the systems needed to diagnose and treat CHD are often inaccessible to most families. In some regions, up to 90% of children live in "pediatric heart health deserts," areas without timely access to safe diagnosis or care. This lack of access is compounded by the fact that CHD often falls between categories, leading to misalignment in planning and policy on a global scale.

While CHD is present at birth, it is not always included in maternal and newborn health programs, nor cardiovascular disease plans, which typically focus on adult conditions and lifestyle factors. Despite the prevalence of CHD, many children fall through the cracks due to systemic delays, missed opportunities, and a health system ill-equipped to respond to congenital heart disease.

Fortunately, there are models from low- and middle-income regions that offer hope for transforming CHD care. Kerala, India, has successfully approached CHD as a population health challenge rather than a case-by-case treatment model. By channeling funding and resources, Kerala developed a "Continuum of Care" that includes recognition, diagnosis, referral, transport provisions, collaboration with the private sector for surgical treatment, and follow-up care.

This approach resulted in significant improvements, with 22,876 children with suspected CHD registered, 767 newborns and 2,612 infants undergoing therapeutic procedures, and a decline in infant mortality from 12 per 1,000 to 6 per 1,000. Despite systemic shortcomings in many African nations, grassroots efforts by parent-led groups are helping to fill gaps by sharing information, resources, and navigating complex referral pathways.

However, the ultimate barrier of cost remains a significant challenge, as surgical costs can be several times the GDP per capita in some countries. Public financing for care pathways that considers the entire healthcare journey, including medications, follow-up visits, and the loss of income, is crucial for providing comprehensive care to families affected by CHD.