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

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 selected leading to such problems as:

### **3.5.1 Acute complications while airborne**

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

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

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.

Challenges in the Management of Congenital Heart Disease in Developing Countries 269

(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

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

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

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

**5. Reducing the toll of congenital heart disease in developing countries** 

The huge toll of congenital heart disease in developing countries obviously calls for urgent action. Management of congenital heart disease in developing countries has hitherto however focused primarily on treatment. While treatment is very important, the huge capital investments necessary to treat affected children and those yet to be born, is clearly beyond the limited health budgets of many developing countries. The need for a paradigm shift in the management of cardiac diseases from treatment only, to prevention plus treatment and rehabilitation has been highlighted (Pezzella 2010). This has implications as well for congenital heart disease, at least those that are clearly preventable and presents the need for paediatric cardiologists to be more involved in efforts to eliminate or minimize the occurrence of congenital heart diseases of preventable cause. Furthermore, the prevention of congenital heart disease would be difficult to separate from that of other birth defects and therefore should be an integral part of prevention

Even though religious and socio-cultural differences may not permit the wholesale adoption some of the methods used, there are many lessons to be learnt from the experiences of more developed countries, where the incidence of birth defects have been reduced by about 75%

unknown cause (Christianson & Modell, 2004 as cited in March of Dimes 2006).

associated with congenital heart disease in over 90% of cases (Park, 2007).

Dimes, 2006).

(Bassili et al., 2000; Children's HeartLink, 2007).

strategies for birth defects generally.
