**1. Introduction**

The 2011 World Bank classification of nations and their economies based on 2010 per capita Gross National Incomes (GNI) lists 35 countries as low income (GNI 1005 US Dollars or less), 56 as lower middle income (1006 – 3975 USD), 54 upper middle income (3976 – 12275 USD) and 70 as high income (12,276 USD or more). Low and middle income countries are often conveniently referred to as developing countries (World Bank, 2011) but vary greatly in their levels of economic, infra-structural and health care development. The challenges of managing congenital heart disease in many low income and lower middle income countries are overwhelming, with very few or in some cases no treatment and prevention strategies in place at all. On the other hand, many upper middle income countries and a few lower middle income ones having been able to establish successful programmes for the treatment of congenital heart disease, albeit not without challenges, are striving to extend these services to the under-served parts of their populations while still confronted with challenges of prevention.

Congenital heart disease (CHD) refers to the presence of a structural abnormality of the heart and / or great vessels that is present at birth and is of actual or potential functional significance. The term usually excludes congenital arrhythmias and cardiomyopathies even though these may be based on genetic or other abnormalities that are present at birth (Hoffman & Kaplan, 2002). In recent decades, the management of congenital malformations of the heart has improved remarkably in the developed world such that even very complicated lesions are now amenable to treatment. The situation in many of the least developed countries / regions is the direct opposite – only very few children born with congenital heart disease ever receive the appropriate treatment or care. This is the result of several factors that may be considered obstacles or challenges to congenital heart disease management in these regions. Thus, hundreds of thousands of children die each year from congenital heart disease, while millions more remain in desperate need of treatment in the developing world. Alleviating the sufferings of such children is a major challenge to practitioners and perhaps even more so to the families of affected children. Several strategies have been advocated and used in attempts to help some of the affected children access the necessary care. These strategies vary from transporting a few affected children to other countries for treatment, to short-term visits by teams of experts from advanced countries to perform surgical procedures on a few children, to establishing regional centres

Challenges in the Management of Congenital Heart Disease in Developing Countries 265

mortality or survival rates. The disability-adjusted life years (DALYs) lost may give a more accurate picture of the disease burden since this measure takes into account the incidence, mortality as well as the quality of life of those who survive. However, there is a paucity of all these categories of data from developing countries, making it difficult to estimate the true burden of congenital heart disease. What is undisputable is that congenital heart disease in developing countries is associated with a very high mortality rate and that in spite of this, hundreds of thousands more children are added every year to the growing pool of affected children requiring intervention. Estimates of the actual numbers of these children however vary widely. This absence of accurate data constitutes one of the major obstacles to efforts to tackle the problem of congenital heart disease in developing countries as it underrates the problem, hinders planning and undermines arguments for more resource allocation in the face

Country estimated affected births per year

Table 1. Estimated number of congenital heart disease live births in selected developing

**3. Peculiarities and challenges of CHD diagnosis and treatment in developing** 

Because of the stage of their socio-economic and infrastructural development and the fact that the treatment of congenital heart disease requires specialized centres that are expensive to establish and to maintain, the management of congenital heart disease in developing regions differs in many significant and challenging aspects from what obtains in the developed world. A major contributing factor is that congenital heart disease is usually not considered a priority for resource allocation by policy makers in developing countries (Saxena, 2005). Many such countries and also international donor agencies have been preoccupied by infectious diseases and lack policies on congenital heart disease control and treatment even if under the umbrella of paediatric cardiac diseases and / or congenital malformations (Children's HeartLink, 2007). Some of the major peculiarities of congenital

Late diagnosis – unlike in developed countries where prenatal diagnosis and neonatal corrective surgery are now the norm, CHD in developing countries are typically diagnosed

heart disease patients and programmes in developing regions therefore include:

Bangladesh 33,844 Brazil 26,568 China 148,844 DRC\* 19,805 Ethiopia 22,499 India 198,385 Indonesia 35,076 Nigeria 37,146 Pakistan 42,166

of the many other competing health care needs.

*Adapted from: March of Dimes Global Report on Birth Defects, 2006* 

*\* Democratic Republic of the Congo* 

countries

**regions** 

**3.1 Late diagnosis** 

of excellence for training and treatment in some developing countries (Stolf 2007, Pezzella 2010). These strategies however are also not without their own inherent challenges. This chapter will highlight some of the peculiarities of management and the practical problems often encountered in the diagnosis, treatment and prevention of congenital heart diseases in the developing world.
