**3.2 Paucity of personnel and facilities for diagnosis and treatment**

These are persistent problems that have been highlighted by many authors. They not only contribute to late diagnosis but also to late treatment if at all diagnosed, or no treatment at all and eventual loss to follow-up. Some of the patients receive palliative medical treatment e.g. for heart failure or propranolol to help reduce the frequency of hypercyanotic attacks in patients tetralogy of Fallot or similar physiology. However, with the absence of health insurance in many countries, the direct and indirect healthcare costs both of routine hospital visits (transportation, medication and loss of man hours) and repeated hospitalizations often result in 'catastrophic health care expenditure' for the families (Sadoh, 2011). As a result, many go into debt, sink further into poverty and/or default from follow-up.

#### **3.3 High prevalence of complications**

Due to late presentation and lack of treatment coupled with the high prevalence of infections and nutritional deficiencies in many developing communities, patients with congenital heart disease frequently present with such complications as chronic congestive heart failure, severe polycythemia, frequent and severe hypercyanotic attacks, cerebrovascular accidents, malnutrition and infective endocarditis – or develop them in the course of follow-up. These frequently necessitate hospital admissions to treat the complications and are a further drain on family and health system resources. Thus paradoxically, although

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,

Late presentation due to high level of illiteracy in many of these populations, coupled with lack of awareness about health issues generally, but especially about CHD. This is compounded by poverty and lack of access to basic medical care (Children's HeartLink, 2007). Thus the first presentation to hospital or to a specialist may be because of

Ignorance about CHD even among health workers, leading to frequent non-diagnosis or mis-diagnosis with wrong treatment and /or inappropriate counseling (LeBlanc, 2009). Heart disease is often wrongly assumed to be rare or very unlikely in children, so that its index of suspicion among health workers is very low. It is therefore not uncommon for children with CHD to have been treated for various other conditions such as tuberculosis or asthma before being eventually referred to a specialist that makes the correct diagnosis. The parents of a child with tetralogy of Fallot who were both health workers for example, had resigned themselves to his early demise as they were told no definitive treatment existed. He presented to a tertiary centre with endocarditis at 10 years of age and after a turbulent admission eventually had his heart lesion repaired in another country. Though his heart is

These are persistent problems that have been highlighted by many authors. They not only contribute to late diagnosis but also to late treatment if at all diagnosed, or no treatment at all and eventual loss to follow-up. Some of the patients receive palliative medical treatment e.g. for heart failure or propranolol to help reduce the frequency of hypercyanotic attacks in patients tetralogy of Fallot or similar physiology. However, with the absence of health insurance in many countries, the direct and indirect healthcare costs both of routine hospital visits (transportation, medication and loss of man hours) and repeated hospitalizations often result in 'catastrophic health care expenditure' for the families (Sadoh, 2011). As a result,

Due to late presentation and lack of treatment coupled with the high prevalence of infections and nutritional deficiencies in many developing communities, patients with congenital heart disease frequently present with such complications as chronic congestive heart failure, severe polycythemia, frequent and severe hypercyanotic attacks, cerebrovascular accidents, malnutrition and infective endocarditis – or develop them in the course of follow-up. These frequently necessitate hospital admissions to treat the complications and are a further drain on family and health system resources. Thus paradoxically, although

2007). Some of the reasons for this pattern of late diagnosis have been identified as:

**3.1.2 Ignorance about CHD even among health workers** 

'healed', he now suffers from a seizure disorder.

**3.3 High prevalence of complications** 

**3.2 Paucity of personnel and facilities for diagnosis and treatment** 

many go into debt, sink further into poverty and/or default from follow-up.

**3.1.1 Late presentation** 

complications.

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 obviously yield more fruitful results.

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

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 procedures are able to do so.
