When Tendai Moyo’s daughter, Rudorwashe Grace, was born in a Zimbabwean hospital, she struggled to breathe, her lips turned blue, and feeding exhausted her. Recognising instantly that her baby was seriously unwell, Tendai repeatedly sought medical help, but her concerns were ignored. Because her daughter’s illness was invisible and she appeared to others like a healthy baby, her symptoms were even dismissed as witchcraft.
It took six months of fighting for Rudorwashe Grace to be diagnosed with tricuspid atresia and cardiomegaly, a severe congenital heart defect. By then, valuable time had been lost. For babies with the most serious heart defects, those months can be the difference between life and death.
But even after diagnosis, Tendai couldn’t find the care her baby needed. At the time, Zimbabwe had only one paediatric cardiologist for a population of 15 million, practising privately in Harare, about 400 kilometres away. With no hope that surgery could take place locally, Tendai’s only chance was to raise around US$20,000 to send her daughter to India for treatment.
Tragically, her daughter died at just 10 months old. Her death was not inevitable. It was the result of systemic delays, missed opportunities by governments and policymakers and a health system that was not equipped to respond to congenital heart disease.
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What went wrong?
Tendai’s story is sadly far from unique. Congenital heart disease (CHD) is one of the most common birth defects in the world, affecting up to one in every 50 newborns. Across Africa, this means 500,000 babies are born each year with damaged hearts. Some will have small defects that can be monitored, but at least a third will need critical treatment in their first year of life. Without it, up to 85% of children with the severest form of CHD will die.
For thousands of African children effective treatment is a matter of life and death. Despite this, across much of Africa, the systems needed to diagnose and treat CHD are dangerously out of reach for most families.
Outlined in the World Heart Federation’s yearly World Heart Report, as many as 90% of children in some regions of Africa, such as Somalia, Djibouti, Niger and Chad, live in “paediatric heart health deserts” – areas with no timely access to safe diagnosis or care for congenital heart disease. The very few paediatric cardiac surgery centres in Africa are often concentrated in capital cities, where the costs of travel and accommodation alone can render surgery unfeasible.
As the report illustrates, congenital heart disease often falls between categories, prompting planning and policy misalignments on a global scale. It is present at birth, but not always included in maternal and newborn health programmes. It is a heart condition, but often missing from cardiovascular disease plans, which are typically designed around adults and place emphasis on lifestyle factors and hypertension, rather than conditions present from birth. It requires surgery, but a very specialised surgery that may not be included in national surgical strategies.
Even when safe, affordable and timely surgery can take place, a decent quality of life can only be assured by lifelong follow-up care. In today’s global healthcare lottery, the result is that many children fall through the cracks.
Creating pathways
Despite the prevalence of these “heart-health deserts”, encouragingly, there are models from low- and middle-income regions that can be adapted. Kerala, in India, is widely lauded for its efforts to approach congenital heart disease as a population health challenge, rather than with a case-by-case treatment model. When Kerala channelled funding and resources into this approach, the state developed a “Continuum of Care” for CHD to not only encapsulate recognition, diagnosis and referral, but with provisions for transport, integrated collaboration with the private sector for surgical treatment and follow-up care.
The results of this shift in approach during the programme’s first six years speak for themselves: 22876 children with suspected CHD were registered; 767 newborns and 2612 infants (30 days-1 year) underwent a therapeutic procedure that typically involved open-heart surgery. Most newborns with CHD were identified through prenatal or neonatal screening. During this period the infant mortality of the state of Kerala declined from 12/1000 to 6/1000.
Top-down vs. bottom-up
Despite systemic failings at a national and state level in many African nations, there are success stories at a grassroots level that provide a foundation for funding to transform into an established pillar of CHD care. Many parent-led groups across the continent are filling in gaps left by health systems by sharing information and resources and helping families navigate complex referral pathways. Investing in patient and caregiver leadership, peer support networks and community-based organisations are an essential component of strengthening health systems, providing care and support to the whole family over a lifetime.
However, peer-to-peer support remains too ad-hoc and does not address the ultimate barrier of cost, even where there are paediatric healthcare provisions available. In Rwanda, the mean surgical cost can be over seven times the GDP per capita, while in Nigeria this represents two to three times the national income. With CHD omitted or underrepresented in national child health plans and non-communicable disease strategies, and in the absence of universal healthcare, families must often fundraise on social media to save their children, or resort to selling possessions or borrowing money.
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As seen with the Kerala model, public financing for care pathways is most effective when it takes into account the entire healthcare journey, beyond the moment of surgery. Families must consider medications, follow-up visits and the loss of income incurred by caring for a child with congenital heart disease, and many would greatly benefit from psychosocial support to alleviate grief, anxiety, stigma and isolation. While existing peer-to-peer networks are valuable, without universal health coverage and public financing that considers the entire care journey, families will continue to be pushed into poverty, even if capacity for diagnosis and paediatric surgery is dialled up.
This point can be universally agreed: a child’s chance of surviving congenital heart disease should not depend on whether they are born near the right hospital, to parents who can raise enough money, or in a country with a specialist team. Every child born with a heart defect deserves a pathway to care. Africa has millions of children who need help. We now need to build and widen access to an effective and equitable system to treat them.
Clinical Professor and Head of the department, Paediatric Cardiology, Amrita Institute of Medical Science and Research Center, Kochi, Chair, Neglected cardiovascular disease expert group, World Heart Federation.