Two Lakh Children With Heart Defects Left Untreated Every Year; Charity Initiative Offers Lifeline

India witnesses nearly 2.5 lakh children being born annually with congenital heart defects, including conditions commonly described as a “hole in the heart.” However, only around 30,000 to 40,000 paediatric heart surgeries are performed across the country each year.

“You can imagine that almost two lakh children are left untreated every year. Some of them die because of delayed diagnosis, lack of awareness, shortage of specialised centres, and the high cost of surgery,” pointed out Dr. Viresh Mahajan, Chairman of Pediatric Cardiac Sciences at Yatharth Group of Hospitals.

So when three-year-old Ayaan, from a small village in Uttar Pradesh, began turning blue while playing and doctors diagnosed him with a hole in the heart that required urgent surgery, his father, a daily wage labourer, was devastated. The surgery would cost nearly Rs 2 lakh—an impossible amount for the family.

However, thanks to the Victorious Heart Project—an initiative which connects children suffering from congenital heart disease with donors willing to sponsor their treatment—today, Ayaan runs, laughs, and attends school like any other child.

According to Dr. Mahajan, who is associated with the project along with a clinical team, the idea emerged after they repeatedly witnessed children losing the chance of survival simply because their families could not afford surgery.

“We regularly come across children who need heart surgery, but many families cannot afford the expenses involved,” Dr. Mahajan said. “For instance, sometimes a family may have only Rs 20,000 while the surgery may cost Rs 2 lakh or more. In such cases, funds are arranged through the Victorious Heart Project with the help of charitable organisations and individuals.”

The need to reach out to such kids is urgent and enormous, given that congenital heart disease remains one of the most common birth defects globally, affecting nearly 8 to 10 out of every 1,000 live births. Many of these children require corrective surgery early in life. However, treatment costs often range from Rs 2 lakh to Rs 5 lakh, depending on the complexity of the condition.

Doctors say many children born with “holes in the heart” suffer from recurrent chest infections, breathlessness, poor growth, and fatigue. If untreated, the condition can eventually lead to severe complications or even death.

“Most of these children can lead completely normal lives if they receive timely treatment,” Dr. Mahajan said. “The tragedy is that treatment exists, but affordability becomes the barrier.”

Under the Victorious Heart Project, unlike traditional charity drives, the initiative works as a facilitation platform. Doctors identify children who can be in the age group from two months to 16 years old in urgent need of treatment and connect their families with donors, charitable trusts, and philanthropic organisations willing to sponsor surgeries.

The initiative does not directly collect money into a personal or project account. Instead, payments are transferred directly to hospitals to maintain transparency.

“We only facilitate the connection,” Dr. Mahajan explained. “The funds generated do not come to us personally or to the project account. Payments are made directly to the hospital for treatment.”

Over the last three years, the initiative, which was kicked off from Sarvodaya Hospital, Faridabad, has helped nearly 260 to 270 children—ranging from newborns to late teenagers—undergo cardiac treatment and surgery.

The process, however, is far from simple. Dr. Mahajan said identifying genuine beneficiaries requires extensive documentation and verification. Sponsoring organisations often insist on financial eligibility proof, such as Below Poverty Line (BPL) certificates, income documents, and medical assessments, before approving support.

Medical teams often remain involved beyond surgery, helping families navigate hospital admissions, follow-up visits, and recovery care.

India continues to face major disparities in access to paediatric cardiac services, especially in smaller towns and rural areas. Many children are diagnosed late because parents fail to recognise symptoms or cannot access specialist care in time. Dr. Mahajan said awareness is equally important. Persistent breathlessness, bluish discoloration of lips, recurrent chest infections, delayed growth, and fatigue in children should never be ignored.

“Every child deserves a chance to live a healthy life irrespective of the family’s financial condition,” Dr. Mahajan said. For families like Ayaan’s, that chance has meant everything.

“About 20% of congenital heart defects need treatment within one to six months of birth, while nearly 80% can be treated around three years of age. Timely treatment is extremely important because untreated children can develop long-term complications,” the doctor said.

Medical experts said the exact cause remains unknown in nearly 80% of cases, though several risk factors have been identified. Smoking and alcohol consumption during pregnancy, parental history of heart defects, poor maternal health, radiation exposure, and consanguineous marriages have all been associated with a higher risk of congenital heart disease.

“If one of the parents has a heart defect, the chances of the child developing a similar condition increase. Consanguineous marriages are also associated with higher prevalence in some communities,” the specialist said.

Also, children born in war-affected regions exposed to radiation have also shown a relatively higher prevalence of congenital defects. However, Dr. Mahajan pointed out that developed countries have managed to reduce the burden of severe congenital heart disease through routine prenatal screening and early detection during pregnancy.

“In many developed countries, every pregnant woman undergoes foetal anomaly scans between 18 and 20 weeks of pregnancy. Severe defects are detected early, and difficult decisions regarding continuation of pregnancy are taken in some cases. In India, delayed diagnosis remains a major problem,” the doctor said.

Also, “there is a common misconception that children operated for congenital heart disease become permanently weak or disabled. But nearly 80% of children who receive timely surgery can go on to live normal lives,” the specialist said.

Dr. Mahajan also highlighted the severe shortage of paediatric cardiac centres in India. While experts estimate the country requires nearly 250 to 300 specialised centres, only around 65 centres currently perform paediatric cardiac surgery, most of them concentrated in metropolitan cities.

“In Uttar Pradesh, for a long time, SGPGI Lucknow was the only major government centre doing paediatric cardiac surgery despite the State’s huge population. Outside metros, access remains very limited,” the doctor said. He added that eastern and northeastern India continue to remain significantly underserved in terms of specialised paediatric cardiac services.

Though government schemes such as Ayushman Bharat and State programmes like Rashtriya Bal Swasthya Karyakram (RBSK) offer financial support to some patients, experts pointed out that access remains inconsistent as many hospitals are still not empanelled under these schemes—an issue they say warrants serious policy attention.