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

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 heart disease patients and programmes in developing regions therefore include:

### **3.1 Late diagnosis**

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

Challenges in the Management of Congenital Heart Disease in Developing Countries 267

congenital heart diseases are often not considered to be of priority and their treatment usually not budgeted for, they still constitute a huge drain on limited health care resources. The same factors also predispose patients to high rates of surgical complications and mortality in the few available surgical treatment facilities (Rao, 2007; Mocumbi et al., 2011). Channeling these more or less wasted resources into planned care for these children will

**3.4 Emphasis on palliative and closed heart procedures and on "curable" congenital** 

In some parts of the developing world it is a luxury even to have rudimentary cardiac surgery services. When present these are often plagued by scarce resources including funds, personnel, expertise, equipment and consumables. In some places shortage of electricity and water supplies compound the problems. It is usually necessary to prioritize care and triage patients so that as many children as possible can benefit from the available resources without also undertaking procedures that may constitute an unnecessarily high risk and waste of resources under the circumstances. Therefore cardiac surgery centres in developing regions often place more emphasis on palliative and closed heart procedures especially when just beginning (Rao, 2007; Mocumbi et al., 2011). Even so, in many of the least developed countries, the number of centres that have the capability to undertake these procedures may be very few and far between, so that the few families that can afford them do still have to travel long distances within or even outside their own country. Eventually, only a minority of children that might have benefitted from such

Apart from the expense, comparatively few children can benefit from this option of treatment compared with the large number affected. It has been described as the worst option because it does not create human and organizational expertise for the country (Stolf, 2007). Also, several challenges have been associated with this alternative. Sometimes in an attempt to help the "neediest" there may be poor patient selection, especially when an inexperienced physician is involved. Very sick, advanced or complicated cases may be

Acute complications while airborne - such as hypercyanotic attacks. These may necessitate emergency landings. If there is no one on board knowledgeable enough to give the appropriate emergency management, death is a real possibility. Thus some airlines require

Pre-operative or early operative mortality in the host country. This creates additional problems such as the need for a distraught parent to decide whether and how to bury the child in a foreign country, or whether to cremate or to transport the corpse back home for burial. Apart from the additional burden on the host organizations/families, this creates immediate and later psycho-social problems for the parents and families of the affected child.

mandatory medical escorts for such patients – which further increase costs.

**3.5.2 Pre-operative or early operative mortality in the host country** 

obviously yield more fruitful results.

procedures are able to do so.

selected leading to such problems as:

**3.5.1 Acute complications while airborne** 

**3.5 Transportation of patients to other countries for treatment** 

**heart lesions** 

late (Bannerman & Mahalu, 1998; Saxena, 2005; Mocumbi et al., 2011). The mean age at diagnosis or treatment varies depending on whether the data are from a purely paediatric service or include adults as well and can range from the first day of life to almost 80 years (Bode-Thomas et al., 2003, Mocumbi et al., 2011; Ibadin et al., 2005). As a result, most of the cases seen are those with more 'favourable' lesions that have been 'naturally selected' (Rao, 2007). Some of the reasons for this pattern of late diagnosis have been identified as:
