Andersons pediatric cardiology 2257

formative years In the event CHD is suspected, facilities for accurate diagnosis in the form of echocardiography machines with pediatric and newborn transducers and skilled personnel are quite limited It is also not uncommon for echocardiograms to be performed by adult cardiologists As a result, erroneous reports are common There are many barriers to the timely referral of patients to a pediatric heart program even when CHD is suspected or recognized Primary caregivers, including pediatricians, may not often perceive the urgency in referring of many critical CHDs There is also a general perception that treating CHD is a futile exercise, contributing to failure of timely referral Geographic barriers result from a severe shortfall of comprehensive pediatric heart programs in LMICs Most programs are largely clustered in and around large cities.19,21 Geographic barriers in combination with poverty and ignorance conspire to ensure that most newborns with heart disease are not referred in a timely fashion This is particularly true for most of Africa,24 large parts of eastern and northern India, Afghanistan, Pakistan, Iraq, and the central Asian countries In some countries, such as India and China, there is gender bias favoring boys, and this is a significant barrier to girls with CHD getting attention.25 Because there are no organized systems for transporting a sick newborn or infant with heart disease in LMIC settings, many neonates with CHD develop sepsis and end-organ injury prior to reaching a pediatric cardiac program.26 This significantly impacts mortality and morbidity The vast distances that need to be covered to reach a pediatric heart program further compound these challenges In addition, ambulance services (road or air) for newborn transport are expensive and generally beyond the reach of most families in LMICs For newborns with critical CHD, reaching a tertiary care center while in circulatory collapse poses not only medical challenges but also ethical challenges when there is evidence of major neurologic insult The present combined capacity of all pediatric heart programs in LMICs falls woefully short of the actual requirements.17,19,21 Most programs are overwhelmed Programs that provide care at subsidized costs often have long waiting lists of several thousand patients Programs in private hospitals are expensive and unaffordable for the average family Nevertheless, even these units are facing the pressure of increasing numbers of patients with financial means, as well as demand from overseas patients seeking better pediatric cardiac care Acquired Heart Diseases Children with acquired heart disease have similar needs for their care as CHD in terms of infrastructure and resources Rheumatic Heart Disease (See Also Chapters 54 and 55) RHD is largely a disease of the poor, underprivileged, and marginalized populations who often escape the gambit of health services, particularly when it is privatized.18 A detailed discussion on the burden of RHD is provided in Chapter 89 Chapter 55 describes the epidemiology of RHD Treatment of established RHD can be effectively undertaken only in comprehensive pediatric cardiac facilities and a shortfall in programs and personnel is likely to affect the quality of care and outcomes Kawasaki Disease (See Also Chapter 53) Kawasaki disease is likely to be underreported in LMIC settings because it is likely to be unrecognized.27 Given the need for close clinical monitoring, advanced imaging, and expensive medications, health system deficiencies are likely to adversely impact children with Kawasaki disease in LMICs Delays in administration of intravenous immunoglobulin are likely to translate into a higher incidence of coronary aneurysms and related complications Myocarditis and Cardiomyopathy (See Also Chapters 61 and 63) The fundamental requirement of pediatric intensive care services for care of patients with advanced heart failure is in very short supply in LMICs.28 Advanced life support systems such as extracorporeal membrane oxygenation and ventricular assist devices are extremely scarce and largely unaffordable Pediatric heart transplant is not a viable option in most LMICs because of virtual absence of organ donation networks and limitations in infrastructure and expertise Furthermore, the cumulative costs of managing a patient with cardiac transplant is simply too prohibitive for the fragile health systems Patient Profile of Congenital Heart Disease in Low- and Middle-Income Countries The patient profile of CHD that is typically seen in LMICs is unique because of the previously listed factors that contribute to late presentation In addition, common childhood conditions that prominently include undernutrition and respiratory infections frequently complicate the clinical presentation of CHD This section will discuss these specific challenges and suggest ways to approach them Late Presentation Delays in presentation result in varied manifestations depending on the age and specific condition Critical Heart Diseases in Neonates Neonates with critical heart disease are especially vulnerable to delays in diagnosis and referral In addition, they are also particularly vulnerable to clinical deterioration during transport In absence of routine screening and because of limitations in supervision, CHD is often not diagnosed while the newborn is in hospital for the 24 to 48 hours following delivery.22 Critical CHD is often identified after discharge, when physiologic perturbations are clinically manifest The newborn is typically brought back to a hospital following discharge, with varying degrees of insult in the form of hypoxia, end-organ injury, and/or metabolic derangement In addition, the clinical picture is often further complicated by the common occurrence of neonatal sepsis with an increasing and alarming trend toward multidrug resistant bacterial and fungal infections.29 Although it is likely that a substantial number of newborns with CHD do not survive, the actual proportion of newborns who die because of untreated CHD has not been determined in the LMIC environment Among survivors, neurologic insult is likely and a wide spectrum of possibilities ranging from subclinical insult to overt manifestations of hypoxic ischemic encephalopathy can occur Given the fact that late diagnosis of CHD is not uncommon even in advanced nations with mature and well-resourced health systems.22 In LMICs many more newborns with CHD present are late when care is complicated and frequently no longer possible The exact consequences that would result from late presentation vary depending on the specific CHD Table 88.2 lists these consequences in the common CHD categories in the newborn Table 88.2 Consequences of Delay in Individual Neonatal Heart Disease Categories ... Chapter 55 describes the epidemiology of RHD Treatment of established RHD can be effectively undertaken only in comprehensive pediatric cardiac facilities and a shortfall in programs and personnel is likely to affect the quality of care and outcomes... higher incidence of coronary aneurysms and related complications Myocarditis and Cardiomyopathy (See Also Chapters 61 and 63) The fundamental requirement of pediatric intensive care services for care of patients with advanced heart failure is in very short supply in LMICs.28... Advanced life support systems such as extracorporeal membrane oxygenation and ventricular assist devices are extremely scarce and largely unaffordable Pediatric heart transplant is not a viable option in most LMICs because of virtual absence of organ donation networks and limitations in infrastructure and