The cause of most cases of congenital heart disease is unknown and the rate of disease is fairly stable across countries and populations, making the burden heaviest on low-income countries with high fertility rates.
‘Individuals with congenital heart defects need lifelong care and follow-up from primary care specialists, special attention to dental care, and, in many cases, more surgical interventions from trained health professionals.’
Although overall child mortality has decreased by half globally, death and disability due to congenital heart disease has consistently increased in low-income and middle-income countries over the past two decades. Access to care for children with heart disease has not kept pace.
Sadly, 90% of the children with CHD live in poor regions with little or no access to care. Congenital heart disease and other serious birth defects are among the top five causes of death of children worldwide.
Children's HeartLink calls for the needs of children with heart disease to be included in efforts to strengthen health systems around the word. Specifically, priorities must be made to build a pediatric cardiac workforce, collect data on CHD in national health surveys and cause of child death statistics, and finance health coverage in a way that protects families from impoverishment when they seek care.
Brian Atwood, former Administrator of USAID, urges leaders in global health and development: "Increasing access to pediatric cardiac care is a lofty but not insurmountable goal. It is an achievable goal, grounded in health system sustainability and equity. It will save children's lives."
Furthermore, individuals with congenital heart defects need lifelong care and follow-up from primary care specialists, special attention to dental care, and, in many cases, more surgical interventions from trained health professionals.
Caring for children with heart disease is not a dilemma of investing in tertiary versus primary health care. Paediatric cardiac success is possible in low-resource settings when incorporated in broader health systems strengthening efforts.
Results from 27 centres in low-income and middle-income countries representing all continents, except for Africa, that participated in the International Quality Improvement Collaborative for Congenital Heart Surgery in Developing World Countries (IQIC) show that when international investments and training partnerships support such efforts, substantial reductions in infection and mortality rates can be achieved.
Since the turn of the millennium, child deaths have been cut in half thanks to improved public health and poverty reduction efforts. It is predicted that the number will halve again by 2030. This target will not be met without addressing congenital heart disease. As the overall rate of child deaths decreases, the burden of children born with heart disease will become more apparent.
An estimated 58% of congenital heart disease burden could be averted if surgical practices of high-income countries were brought to scale in low-income and middle-income countries.
Reliable data on the burden of congenital heart disease would better allow countries and the global health community to allocate resources to the child health needs in their communities. As countries develop economically, the burden of poverty-related diseases, especially infectious diseases and nutritional deficiencies, in children younger than 5 years diminishes.
Developing local expertise for treating children with heart disease has ripple effects to other health services. Paediatric cardiac surgery interfaces with many other specialties in a hospital. Investments in paediatric cardiac surgery can, therefore, lead to parallel improvements elsewhere in a hospital.
- Bistra Zheleva, The invisible child: childhood heart disease in global health, The Lancet (2016)