The cries of a newborn baby are usually a sign of life and hope, but for many families in low and middle-income countries, these cries can signal the beginning of a long and arduous journey. Congenital heart diseases (CHDs) are a significant health burden, particularly in these regions, where they account for the highest years of disability. Despite advancements in medical science, the incidence of CHDs remains constant or may even be increasing.
In Ghana, the public health crisis of water pollution has exacerbated the problem, leading to birth defects in affected areas. The incidence of congenital heart disease is alarmingly high, with 1 in every 100 babies born affected. Establishing a center of excellence capable of catering to these individuals takes approximately ten years. This timeline does little to alleviate the current crisis or assist those already affected, as any action taken now would only bear fruit in the next decade. The issue extends beyond access to health care facilities; it also encompasses the capability of these institutions to adequately meet patients’ needs.
The complexity of CHD cases in low and middle-income countries adds another layer of difficulty. Many cases go undiagnosed due to limited availability of care, leading to sudden deaths. Additionally, children often live in areas with high incidences of rheumatic heart diseases, further complicating their conditions. Congenital heart surgeons tend to relocate to specialized hospitals in urban centers, creating a transportation barrier for patients needing urgent care. Martha Naambo from Namibia shared how her mother had to leave her five younger siblings to embark on a month-long journey for surgery in the city due to a critical mitral valve tumor. Unfortunately, centers of excellence for treating CHDs are scarce in these regions, and the status quo often involves flying patients out of the country for care. This practice imposes a significant financial burden on families, as surgeries are typically funded out-of-pocket or through community support, as Ruth Ngwaro experienced when her first heart surgery plunged her family into years of debt.
In Pakistan, Mr. Farhan Ahmed recounted his late daughter’s struggle to receive care despite his ability to afford it. The lack of health care facilities capable of performing necessary surgeries meant his daughter, diagnosed with tricuspid and pulmonary atresia at three months old, faced prolonged suffering. When help finally arrived, she contracted pneumonia and had to stay in the hospital longer.
A critical issue is the lack of data for targeted interventions by investors. The absence of research on pediatric heart diseases using machine learning is alarming, given the progress in artificial intelligence within health care. Robotic heart surgery has begun in some countries, pushing the starting line even further for others.
Moreover, there is a dearth of research on peripartum care in the global south, which is concerning amidst technological advancements. The high cost of interventions and lack of insurance coverage exacerbate the problem for many families.
Health care systems in low and middle-income countries are constrained by limited human and financial resources. Brain drain and the pursuit of better opportunities by health care staff worsen the situation as many prefer working in urban hospitals or abroad, where they receive better compensation.
To address these challenges, a primary decentralized health care system is proposed, along with the availability of expert resources and services in rural areas. Incorporating artificial intelligence into diagnosis can enable early detection, reduce disability years associated with CHDs, and improve overall quality of life for affected patients and their families.
By prioritizing these areas and leveraging technology, we can hope to build a more equitable health care system that ensures all children born with congenital heart diseases receive the care they need without imposing insurmountable burdens on their families.
Princess Benson is a medical student in Ghana.
