**4. Challenges of congenital heart disease prevention in developing countries**

The prevention of congenital heart disease, like that of any other disease condition hinges on a basic understanding of its causes. There is widespread ignorance and misconception in many developing countries about the aetiology of congenital heart disease and other birth defects. Even in the developed world, it was only in the 20th century that the causes of birth defects including congenital heart disease were clearly categorized into the three broad groups now widely recognized: those originating in the pre-conception period and due primarily to genetic (chromosomal and single gene defects) and partly genetic causes

Multiple-stage surgeries - if the patient turns out to have a complex heart lesion that requires 2 or more stages of surgery, decisions will also have to be taken as to whether to send the child back home untreated, perform the first stage of surgery only or commit to bringing the patient back after a few years to perform the subsequent stage(s) of surgery. Whatever decision is taken is associated with great cost either of the treatment or the

It has been argued that transporting children to other countries for treatment coupled with intermittent "missions" to existing non-specialist hospitals to carry out cardiac surgery can act as "enabling projects" that help bring the problem into focus while the creation of a sustainable unit is being planned (Yacoub, 2007). Some have however criticized this treatment alternative because only a limited number of patients can be assisted and the results are not consistently satisfactory - since the local hospital conditions are often far from ideal and the team may not be on ground long enough to observe and manage some of the post-operative complications (Stolf, 2007). It is nevertheless a better option than no surgery at all and offers the possibility of training local surgeons and hospital personnel, which

The ideal option remains the development or establishment of treatment centres in the developing countries themselves. This is the most challenging option because of the huge investments required – in terms of technology, infrastructure and the training of personnel (cardiologists, surgeons, intensive care personnel and other cardiovascular specialists) . Some of the success stories notably in India and Brazil have been as a result of home-grown efforts coupled in some cases with the efforts of returning citizens trained in developed countries. Others have been spearheaded by humanitarian efforts of individuals and groups from developed countries – notably in China, Vietnam, Mozambique and Guatemala (Pezella, 2010; Yacoub, 2007). It is a daunting task that requires great commitment in view of the tremendous social and economic challenges often encountered. The biggest challenge here is that of sustainability. The presence of home-grown technology (as in India, Brazil), cost-saving measures such as re-sterilizing and re-using consumables, long-term commitment and support from donor organizations in developed countries and incorporating research into the programme appear to be factors that favour sustainability

**4. Challenges of congenital heart disease prevention in developing countries**  The prevention of congenital heart disease, like that of any other disease condition hinges on a basic understanding of its causes. There is widespread ignorance and misconception in many developing countries about the aetiology of congenital heart disease and other birth defects. Even in the developed world, it was only in the 20th century that the causes of birth defects including congenital heart disease were clearly categorized into the three broad groups now widely recognized: those originating in the pre-conception period and due primarily to genetic (chromosomal and single gene defects) and partly genetic causes

emotional cost to the family of having to send their child home back untreated.

**3.5.3 Multiple-stage surgeries** 

**3.6 Intermittent cardiac surgery missions** 

should be a major focus (Stolf, 2007; Yacoub, 2007).

(Rao 2007, Yacoub 2007).

**3.7 Establishing treatment centres in developing countries** 

(multifactorial inheritance involving interaction of genes and the environment); those arising after conception but before birth (these are usually due to teratogens); and those of unknown cause (Christianson & Modell, 2004 as cited in March of Dimes 2006).

The majority of CHD are attributable to multi-factorial inheritance which is largely not preventable based on the current state of our knowledge. The risk of chromosomal anomalies however increases with advancing maternal age, so that developing countries have a higher incidence of chromosomal trisomies because of limited access to family planning and a high percentage of pregnant women of advanced maternal age (35 years or older). There is often also deficient or absent prenatal screening, diagnosis, and associated services (Modell et al as cited in March of Dimes 2006; WHO 1996). Down syndrome or trisomy 21, the most common chromosomal disorder is associated with congenital heart disease in about 50% of cases. Trisomies 18 and 13 are much less common and are each associated with congenital heart disease in over 90% of cases (Park, 2007).

Teratogen-induced heart defects, though more readily preventable, are more common in developing countries because of higher frequency of intrauterine infection, notably rubella, lack of environmental protection policies, and poorly regulated access to medication (Penchaszadeh, 2002 as cited in Howson et al, 2008). Between 5 and 10% of birth defects in high income countries are of post-conception origin compared with approximately 10 to 15 % for developing countries. In countries with successful rubella immunization programs, congenital rubella has been largely eliminated. In the remaining 50 percent of countries, more than 100,000 infants are born with CRS annually (WHO 2000 as cited in March of Dimes, 2006).

Other factors that contribute to the higher burden of congenital heart disease in developing countries include: poverty, which predisposes women to malnutrition before and during pregnancy, and to a greater risk of exposure to environmental teratogens, parental consanguinity **–** a common practice in some developing countries and inadequate access to health care which hinders the control of some of the risk factors for congenital heart disease (Bassili et al., 2000; Children's HeartLink, 2007).
