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Congenital heart disease is the most common of all birth defects, occurring in about nine per 1000 livebirths globally.1 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. 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.2 Access to care for children with heart disease has not kept pace. Of the 1·35 million children born each year with congenital heart disease,1 90% live in places that do not have adequate access to diagnostics or care.3 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.4 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 (LMICs).5
Data on childhood heart disease in LMICs are not systematically collected in child health or cause of death surveillance programmes, therefore the true burden is probably underestimated. Many of the signs and symptoms of paediatric heart disease (eg, lethargy, poor growth, shortness of breath) can be misdiagnosed; the presenting complaint may be treated, but the underlying condition remains to threaten life and livelihood. 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.6 In their place are the chronic and often complex care needs of conditions such as paediatric heart disease and health systems must be ready to respond accordingly. Today, congenital anomalies, of which heart disease represents nearly half, are the fourth leading cause of neonatal death.7
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, notably surgical scale-up efforts as called for by the Lancet Commission on Global Surgery.8 Results from 27 centres in LMICs 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.9 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.10
Children's HeartLink, a US-based non-profit humanitarian organisation, facilitates long-term relationships between local hospitals and leading international medical teaching institutions. Our model to develop sustainable paediatric cardiac care prioritises integrated health systems, quality training programmes, surveillance, research, and protection against financial hardship. Over the years of our experience, we have seen hundreds of children on waiting lists in Vietnam, India, or China—countries where paediatric cardiac care exists but is distributed unequally, lacks quality, or is stifled by underinvestment. The outcomes for these children are often poor. Some of the lucky ones who undergo surgery have to struggle with health systems ill prepared for children growing up with chronic and sometimes complex medical needs. In the past decade, more than 100 000 children in Brazil, China, India, Malaysia, Ukraine, and Vietnam have received cardiac care at our partner sites.11Four of Children's HeartLink's 13 partner hospitals have become self-sustaining centres of excellence in paediatric cardiac care, and now serve as training partners in their region. Children's HeartLink aims to develop 50 centres of excellence and reach 1 million children with heart disease by 2030.12
In our four-part series of reports The Invisible Child,11 Children's HeartLink brought to light the burden of childhood heart disease and the tremendous inequity in access to paediatric cardiac care. The concluding paper, A Voice for the Invisible Child,13 calls on leaders in health and development to acknowledge paediatric heart disease within the global health agenda (panel).
Investments in increasing capacity at all levels of the health-care delivery system to screen, diagnose, and treat children with heart disease.
Building accredited paediatric cardiac training programmes in all regions globally to assure systematic recognition of the basic signs and symptoms of congenital and rheumatic heart disease.
Improve surveillance through systematic data collection on paediatric heart disease in national health surveys and include in burden of disease and cause of child death statistics.
Assuring paediatric cardiac care will be included in benefits packages in universal health coverage and social protection platforms, and patients will be protected from catastrophic expenses related to their care.
If the global health community is serious about achieving the UN Sustainable Development Goal 3 target of “end[ing] preventable deaths of newborns and children under 5 years of age”,14 leaders in global health development and local policy makers must partner to increase investments for sustainable and equitable access to paediatric cardiac care across the world.
BZ is the Vice President of International Programs at Children's HeartLink. JBA is the former Chair of Children's HeartLink International Advisory Board. We declare no other competing interests.
van der Linde, D, Konings, E, and Slager, M. Birth prevalence of congenital heart disease worldwide. J Am Coll Cardiol. 2011; 58: 2241–2247
Tchervenkov, C, Jacobs, J, Bernier, P et al. The improvement of care for paediatric and congenital cardiac disease across the world: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiol Young. 2008; 18: 63
GBD 2015 Child Mortality Collaborators. Global, regional, national, and selected subnational levels of stillbirths, neonatal, infant, and under-5 mortality, 1980–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet. 2016; 388: 1725–1774
Liu, L, Oza, S, Hogan, D et al. Global, regional, and national causes of under-5 mortality in 2000–15: an updated systematic analysis with implications for the Sustainable Development Goals. Lancet. 2016; (published online Nov 10.)http://dx.doi.org/10.1016/S0140-6736(16)31593-8.