Published Feb 22, 2026 | 7:00 AM ⚊ Updated Feb 22, 2026 | 7:00 AM
Congenital heart diseases. Representative Image. (iStock)
Synopsis: India reported an estimated 7.25 lakh children living with congenital heart disease (CHD) in 2021. Specialists warned that many cases remain fatal if not detected early. Untreated defects may lead to rising pressure in the lungs, gradual weakening of the heart muscle or serious rhythm disturbances that become harder to treat over time.
For thousands of newborns in India, the story of life’s first heartbeat is fragile. India reported an estimated 7.25 lakh children living with congenital heart disease (CHD) in 2021, the highest burden globally, according to the latest available estimates from the Global Burden of Disease (GBD) analysis.
The data also show that South Asia continues to record the largest share of childhood CHD cases and deaths worldwide, reflecting persistent gaps in early detection and access to specialised cardiac care.
Globally, more than 4.18 million children under five were living with congenital heart disease in 2021, even as mortality linked to the condition has declined significantly over the past three decades.
Against the backdrop of India carrying the world’s largest CHD burden, specialists warned that many cases remain fatal if not detected early.
“Some of the heart defects are critical and, if not treated immediately, the baby may not survive the first hours of life,” Dr Jebaraj R, Senior Consultant, Pediatric Cardiology at Kauvery Hospital in Chennai, told South First.
Doctors said CHD varies widely in severity. While some newborns need urgent intervention, others may remain undiagnosed for years due to mild or delayed symptoms. Advances in pediatric cardiology over the past three decades have significantly improved outcomes.
In the 1980s, families were often advised to terminate pregnancies after a CHD diagnosis due to limited treatment options. Today, most defects are treatable.
“Except for one or two complex conditions, most babies can now undergo treatment and live normal, active lives,” Dr Jebaraj said. Government schemes, corporate funding support and specialised cardiac centres have further expanded access to care.
However, improved treatment has not fully translated into early diagnosis.
“Nearly one-fifth of children with congenital heart disease remain invisible to the healthcare system until it is nearly too late,” Dr Atul Surendra Prabhu, a Paediatric Cardiology Consultant at Narayana Health City in Bengaluru, told South First.
Moreover, doctors noted that delayed detection could lead to irreversible heart damage and life-threatening complications. Specialists stressed that timely screening often determines long-term survival and quality of life.
Pediatric heart care often begins before birth. An anomaly scan done between 18 and 20 weeks of pregnancy can detect up to 85 percent of major heart defects.
“Early detection helps parents prepare emotionally and medically for treatment that may be needed soon after birth or later in life,” said Dr Prabhu.
Preventive care is equally important. Although only about four percent of heart defects are hereditary, the mother’s health during pregnancy plays a major role in fetal heart development.
“Women planning pregnancy should start folic acid and multivitamins at least six months before conception,” he said, adding that long-term medications should be reviewed to avoid drugs that may affect the baby’s heart growth.
However, access to quality antenatal screening remains uneven. “Many small towns and rural areas lack trained personnel and proper equipment,” said Dr Jebaraj.
He added that even in advanced hospitals, neonatal echocardiography requires specialised skills and trained experts, which remain limited. “Availability of diagnostic centres and treatment options is still a major challenge in many regions,” he said.
Once a baby is born, vigilance remains crucial, as subtle symptoms can signal serious heart problems.
“Parents should watch for the ‘suck-rest-suck’ feeding pattern, excessive sweating during feeds, or bluish lips and skin,” said Dr Prabhu. “Recurrent pneumonia in infants under three months may indicate an underlying heart defect rather than a routine respiratory infection.”
Beyond structural abnormalities, rhythm disorders affect nearly one-quarter of children with heart disease. “These electrical ‘short circuits’ can alter behaviour, sometimes being mistaken for anxiety,” he said.
Advances in pediatric electrophysiology now allow many such conditions to be corrected as early as age five, reducing the need for lifelong medication.
Long-term outcomes have also improved significantly. “70–80 percent of children with congenital heart disease can be fully cured, while others can undergo palliative procedures and lead near-normal lives,” said Dr Jebaraj.
Most patients, he added, can run, play and have children, except in rare, complex cases.
Conditions such as atrial septal defects, small ventricular septal defects, certain valve abnormalities and rhythm disorders are among those often diagnosed later in childhood, said Dr Jebaraj.
These defects are frequently detected only when children develop reduced exercise tolerance, recurrent respiratory infections, unexplained fatigue, fainting spells or abnormal heart rhythms.
In some cases, they are identified incidentally during routine medical check-ups or school health screenings.
Untreated defects may lead to rising pressure in the lungs, gradual weakening of the heart muscle or serious rhythm disturbances that become harder to treat over time.
While congenital defects are not the sole cause of cardiac deaths in adolescents, undiagnosed structural and rhythm-related heart conditions remain a significant contributor to sudden cardiac events among teenagers, Dr Jebaraj added.
Dr Sweta Dubey, Paediatrician and Director of the Association for Socially Applicable Research (ASAR), India, said delays in diagnosing congenital heart disease stem from gaps across the care continuum.
Detection ideally begins during pregnancy, but inconsistent coverage and quality of mid-trimester anomaly scans lead to missed early diagnoses. “Inadequate antenatal care, particularly low coverage and variable quality of anomaly scans, represents the first major gap,” she told South First.
She noted that India does not have a uniform, mandatory national cardiac screening programme for newborns before discharge.
“Screening for critical congenital heart disease using pulse oximetry is a simple, low-cost intervention that can detect the most severe forms within the first few days of life,” she said, adding that inconsistent implementation means many babies leave hospitals unscreened.
Early symptoms such as poor feeding or recurrent respiratory infections are also frequently overlooked due to limited awareness.
“Universal predischarge pulse-oximetry screening represents the most feasible, scalable, and cost-effective strategy for nationwide implementation,” Dr Dubey said.
She also called for stronger referral systems and improved district-level echocardiography capacity to prevent children with treatable defects from slipping through systemic gaps.
Despite medical progress, continuity of care remains a concern. Many adolescents with late-detected defects fall into a treatment gap while transitioning from pediatric to adult care.
Dr Prabhu stressed the need for structured follow-up through adulthood, including awareness of Grown-Up Congenital Heart (GUCH) disease, to maintain long-term health outcomes.
Experts said universal pulse oximetry screening for newborns, wider access to pediatric cardiologists, and better training for echotechnicians could help close detection gaps.
Under the Union Health Ministry’s Rashtriya Bal Swasthya Karyakram (RBSK), children are screened from birth to 18 years for 30 identified health conditions, including congenital defects, through facility-based newborn screening and community-level outreach.
According to programme guidelines available on the Ministry of Health and Family Welfare website, newborns delivered at public health facilities are screened by medical officers and nurses, while ASHAs conduct home visits during the postnatal period to identify suspected cases and refer them to District Early Intervention Centres (DEICs) for further management.
State-level implementation under the National Health Mission also demonstrates the potential scale of such efforts.
Data published by the Kerala Health Department show that more than 19 lakh newborn screening tests have been conducted under its programme, including pulse oximetry checks to detect critical congenital heart defects, with hundreds of infants flagged for further evaluation.
“When care is timely and comprehensive, the heart is not just a lifeline — it’s a promise of possibility,” Dr Prabhu added.
(Edited by Muhammed Fazil.)
