The geography of congenital heart disease care: Is the world flat?

In The World Is Flat: A Brief History of the Twenty-First Century (2005), Thomas L. Friedman proposed that globalization, facilitated by rapid technological advances, has created an increasingly interconnected or “flat” world by reducing traditional barriers to communication, collaboration, and competition.[1] Extrapolate this to the world of congenital cardiac sciences two decades later, and the reality bites hard. While the rest of the world continued to get flatter, that was not the case with congenital heart diseases (CHD). The physical address of the child with CHD still plays a big role in his/her ultimate outcome.

The remarkable progress in CHD over the past five decades is one of modern medicine’s greatest success stories. Conditions that were once uniformly fatal now have survival rates exceeding 90% in many high-income countries. Sophisticated prenatal diagnosis, neonatal intensive care, advanced surgical techniques, and lifelong multidisciplinary follow-up with the required financial inputs have transformed CHD into a chronic, manageable condition. Yet this success is neither shared equally nor universally. Across much of the world, and particularly in low- and middle-income countries (LMICs), survival continues to depend not only on the severity of the heart defect but also on something far more arbitrary; the place where a child is born.[2,3]

Globally, nearly 1.4 million children are born with CHD each year, and almost 90% are born in LMICs.[2] Ironically, these are the very regions with the least capacity to diagnose, treat, and follow these children. The disparity is no longer simply between countries; increasingly, it exists within countries.[4,5] Geography has become a powerful determinant of health, influencing every step of the patient’s journey; from diagnosis, referral to surgery and long-term survival. However, geography is surrogate of the financial and social inequality, which is the root cause in most situations, limiting access to proper and timely care for CHDs.[6,7] As a result, in spite of the monumental improvements, outcomes for CHD in the LMICs still remain at a variance from the benchmarks of the developed world.[8]

India exemplifies this paradox. The country possesses some of the finest congenital cardiac centers which are internationally recognized. Surgical outcomes from many Indian institutions rival those of leading global programs despite treating patients who often present with well-recognized co-morbidities - advanced disease, severe malnutrition, pulmonary hypertension, and simultaneously, limited financial resources.[9] For logistic reasons, these centers remain concentrated in a handful of urban regions. As a result, for thousands of children born in rural districts, tribal communities, and economically disadvantaged states, the nearest pediatric cardiac center may be hundreds or even thousands of kilometers away. The consequence is predictable-delayed diagnosis, fragmented referrals, and families navigating multiple healthcare facilities before reaching specialized care. Financial hardship compounds logistical challenges. Most families have to contend not only with the costs of treatment but also the costs of travel, the costs of stay in a large unfamiliar city and days spent away from jobs that may get jeopardized. Not surprising that children frequently arrive with irreversible pulmonary vascular disease, profound ventricular dysfunction, or severe nutritional compromise. By then, what should have been a routine repair has become a high-risk operation. In CHD, time is myocardium, pulmonary vasculature, and ultimately survival.

Congenital heart surgery, especially in neonates and infants, is among the most challenging and resource-intensive of medical specialties. Unlike other general surgical conditions, it cannot be decentralized easily at scale. Excellent outcomes require experienced surgeons, pediatric cardiologists, dedicated anesthesiologists, perfusionists, intensivists, specialized nursing, advanced imaging, extracorporeal life support, and institutional volumes sufficient to maintain expertise. Even in the major metros, these requirements are met with difficulty, resulting in varying surgical outcomes. A recent review of neonatal cardiac surgery outcomes in India reported an overall inhospital mortality of 9.3% over the decade from 2014 to 2024, with substantial interinstitutional variation, ranging from 2.3% to 21.3%.[10] Addressing the problem of geographic inequity therefore needs a multipronged approach. Establishing an advanced pediatric cardiac surgery program in every city is not practical. However, there are many more adult cardiac centers that have the potential to take care of simple CHD in older children. These centers need reinforcement and skill enhancement, and then referral pathways need to be established whereby simple cases are taken care of in these adult centers, and complex cases are referred without delay to the specialized centers in the metro cities. Since most of the advanced pediatric cardiac surgical units are in the private hospitals, this process will involve major public– private collaboration. Only then is it possible to ensure that every child can access an existing center without unacceptable delay, with a plan for funding of the surgery or intervention.

Encouragingly, there are examples demonstrating that geography need not always determine destiny. In India, established centers of excellence in private hospitals, state-supported initiatives such as some big public hospitals, Rashtriya Bal Swasthya Karyakram (RBSK), philanthropic institutions such as the Sathya Sai Sanjeevani group of institutions, and public–private partnerships have shown that despite varying modes of delivery of care, coordinated referral networks, universal financial protection, and structured patient tracking can dramatically improve access while maintaining acceptable outcomes.[11] These models illustrate that organization of care can sometimes achieve more than infrastructure alone. However, given the enormity of the volume of CHD and the vast geographical distribution, this level of access to care is far from universal.

Technology offers additional opportunities to flatten the disparities. Telemedicine, cloud-based echocardiography review, artificial intelligence-assisted screening, digital referral platforms, and national registries can shorten diagnostic delays and improve coordination between peripheral hospitals and tertiary centers. These innovations are particularly relevant in geographically diverse countries where specialist expertise cannot be physically present everywhere. Again, this requires a major thrust from the state governments that control how health care is delivered in each state.

Quality improvement collaboratives have also demonstrated that standardized protocols, continuous audit, benchmarking, and shared learning improve outcomes independent of resource level. However, paucity of real-world data about quality of CHD care remains a challenge even in the current era.[12] Participation in national databases and international collaborative initiatives reinforces an important principle: excellence is reproducible when systems are designed around measurement, transparency, and continuous improvement. Perhaps the greatest challenge lies in changing how success is measured. Assessing and reporting low operative mortality from a tertiary center is important, but it reflects only those children who successfully reach surgery. The invisible denominator comprises children who are never diagnosed, never referred, or never arrive in time. A truly equitable CHD program must therefore evaluate access alongside outcomes. Waiting times, travel distance, referral efficiency, financial protection, and geographic coverage deserve the same attention as mortality, morbidity, and survival.

The question posed in the title - “The Geography of Congenital Heart Disease Care: Is the world flat?” - remains uncomfortable because the answer, for many children, is still no. The next frontier in CHD care is not merely developing better operations or more sophisticated technology. It is ensuring that every child, regardless of birthplace, socioeconomic status, or distance from a tertiary center, has timely access to high-quality care. The future of CHD will be defined not only by technical excellence but also by access and equity. Until geography ceases to dictate opportunity, our greatest achievements in congenital cardiac surgery will remain incomplete.