Congenital heart disease (CHD) refers to structural problems with the heart or great blood vessels that are present at birth, occurring when the heart or blood vessels don’t form correctly during foetal development. These defects are the most common type of birth defect and can range from mild conditions, such as a small hole in the heart, to more severe issues like underdeveloped chambers or abnormal valves. CHDs can affect the normal flow of blood through the heart and the body, and may be identified before birth, at birth, or later in life.
Globally, congenital anomalies account for a significant share of infant and under-five deaths. The World Health Organization identifies CHD as a leading cause. Studies indicate that the global birth prevalence of CHD is 17.9 per 10,000 live births.
In India, CHDs are the most common congenital anomaly, affecting more than 2,00,000 newborns every year. CHDs occur in 8 per 1,000 live births in India, translating to roughly one in every 120 babies. About a fifth of these children have severe defects that require intervention within the first year of life. Yet, survival is uneven. A pooled analysis in 2024 of 43 Indian studies covering 30,587 patients, placed in-hospital surgical mortality at 5.63%, nearly double the 2.6–3.5% reported in high-income countries.
Advances in surgery and paediatric cardiology have improved outcomes in major centres, but experts caution that late diagnosis continues to place thousands of children at risk. .
Early signs and barriers
In many cases, CHD is missed at birth. Velmurugan Kannappan, consultant neonatologist and paediatrician, Rela Hospital, Chennai, explained that the early symptoms — irritability, poor feeding, or respiratory distress can mimic routine newborn illnesses. “When a baby looks otherwise well, these subtle signs are often attributed to colic or minor infections, and the underlying heart defect is missed,” he said.
While foetal echocardiography has become a routine part of antenatal care in developed countries, uptake in India is uneven. Mohammed Umar M., consultant neonatologist and paediatrician, SIMS Hospital, Chennai, pointed to this structural problem: “Smaller centres and nursing homes often lack echocardiography machines or trained staff. Even when a murmur is detected, timely referral does not always happen.” These delays, he added, can make the difference between a correctable condition and one that has advanced too far.
Sweta Harish, consultant paediatric cardiologist and foetal cardiology specialist, Narayana Health City, Bengaluru, said that many expecting parents are not even informed of the option. “In cities, the test is available but underutilised. In rural areas, it is almost non-existent,” she said. Early detection through foetal echocardiography can allow for planned delivery in centres equipped to handle complex heart defects, often improving outcomes dramatically.
Awareness remains a challenge even among families who reach hospitals. Supratim Sen, senior consultant, paediatric cardiologist, Narayana Health SRCC Children’s Hospital, Mumbai, sees children arriving late because of persistent misconceptions. “Some families still believe that the hole in the heart will close on its own, or that surgery is too risky to attempt. By the time they decide to act, the child’s condition may have deteriorated,” he said.
Systemic challenges
Experts underline that not all screening requires high-end technology. C. S. Aravind, senior consultant, cardiology, SRM Global Hospitals, Chennai, emphasised the role of pulse oximetry, a simple test that measures blood oxygen levels in newborns. “It is inexpensive and easy to administer, but unfortunately, it is still not a standard part of discharge protocols in many centres,” he said. Universalising this practice, he added, could catch a significant proportion of critical CHD cases before symptoms worsen.
Beyond technology, geography plays a major role. Rajesh Kumar R., consultant, Institute of Heart and Lung Transplant & Mechanical Circulatory Support, MGM Healthcare, Chennai, noted that children in rural areas face multiple disadvantages. “There are fewer paediatric cardiologists, fewer diagnostic facilities, and longer travel times to reach tertiary care. For families already constrained by financial challenges, these delays add up to poorer outcomes,” he said.
While government programmes such as the Rashtriya Bal Swasthya Karyakram (RBSK) aim to identify congenital anomalies through community and school-level screening, experts said there is patchy implementation. The absence of standardised referral pathways means that even when a problem is suspected, families may struggle to navigate where to go next.
Bridging the gap
The consequences of missing the window of early diagnosis are severe. Children diagnosed on time and treated appropriately can grow normally, participate in school activities, and even take part in sports. Those diagnosed late risk developing pulmonary hypertension, irreversible lung and heart damage, or cognitive delays. “Early intervention is not just about survival, it is about the child’s quality of life,” said Dr. Harish.
Experts outlined a series of steps– universal pulse oximetry screening for all newborns before discharge and wider access to fetal echocardiography, particularly in district hospitals. They also emphasise better training for paediatricians, neonatologists, and nurses to recognise subtle signs that can pave for clearer referral pathways between primary centres and tertiary hospitals. Also, expanded public-private partnerships are essential to bring paediatric cardiac care to underserved regions., they said.
India’s large birth cohort means that even modest improvements in screening and awareness could save tens of thousands of lives each year. As Dr. Aravind put it, “We already have the tools, what we need is consistency in using them.” For children born with CHD, the future depends as much on public health systems as on advances in surgical care.
Published – September 17, 2025 07:54 pm IST