Tanvi's death raises the question: Why do children with heart defects wait so long?

Tanvi Pariyani spent most of her life living with a serious congenital heart condition. Her family said they had been taking her for treatment since she was around one and had spent years hoping that she would eventually undergo corrective surgery.

AIIMS, however, gave a different account, saying Tanvi had been extensively evaluated and that doctors later concluded corrective surgery was not feasible because of the complexity of her heart anatomy. Tanvi died at AIIMS on September 1, aged 15.

Her case raises a larger question about children born with congenital heart defects in India:

Why do some children have to wait months or even years for definitive treatment, and what happens when treatment is delayed?

Around 2.5 lakh babies, or possibly more, are born with congenital heart defects in India every year, according to Dr Kuntal Roy Chowdhuri, BM Birla Heart Hospital, Kolkata. While India has made significant progress in treating children with congenital heart disease over the last two decades, he said the need for treatment continues to be much higher than what the country is currently able to provide.

According to Dr Sudhuri, paediatric cardiac surgery has historically remained a neglected area in India. The problem is not simply the availability of surgeons or advances in surgical techniques. A child can lose valuable time even before reaching a cardiac surgery centre because of delayed diagnosis, lack of specialist facilities, financial constraints and fear or lack of awareness among families.

THE FIRST DELAY CAN HAPPEN BEFORE DIAGNOSIS

One of the biggest gaps is identifying congenital heart defects early.

Dr Sudhuri said that in countries such as Australia, where he has worked, many congenital heart defects are detected before birth. Once a serious defect is identified during pregnancy, doctors can plan where the baby should be delivered and what treatment may be needed immediately after birth.

In India, antenatal detection is increasing, but Dr Sudhuri estimates that perhaps no more than 20% of congenital heart defects are detected before birth.

This means many children are diagnosed only after they develop symptoms. For families living in smaller towns and rural areas, another problem can arise at this stage: access to expert echocardiography.

A child may be advised to undergo an echocardiogram, but an expert echocardiographed may not be available in the area. As a result, the diagnosis can be delayed further, and the child may reach a specialist centre much later than is ideal.

NOT EVERY HEART DEFECT CAN WAIT

The timing of treatment is particularly important in critical congenital heart disease. Dr Sudhuri said critical heart defects account for around 25% to 30% of congenital heart defects. These are conditions where a child may need intervention or surgery within the first year of life to survive.

When diagnosis and treatment are delayed, these children can arrive at hospitals in a much more serious condition. They may have multiple complications, repeated admissions, infections, circulatory collapse or may require ventilation.

By the time they reach a specialised cardiac centre, the risks of treatment can therefore be much higher.

The problem, Dr Sudhuri stressed, is not necessarily that cardiac surgery itself has poor outcomes. Advances in surgical techniques, instruments, intensive care, ECMO and nitric oxide have significantly improved the ability of specialised centres to treat children with congenital heart disease.

The bigger gap, he said, is getting the child diagnosed, referred and treated at the right time.

HOW WAITING CAN CHANGE OPERABILITY

In some congenital heart conditions, waiting too long can affect whether surgery remains possible at all.

Dr Sudhuri gave the example of a ventricular septal defect, commonly described as a hole in the heart. Some children with this condition may need surgery at around three to four months of age, or earlier depending on the situation.

If treatment is delayed, the child can develop significant pulmonary hypertension. In some cases, this can progress to a stage where the child may no longer be operable.

This is particularly important because such surgery can have very high success rates when performed at the appropriate time. Dr Sudhuri said ventricular septal defect surgery today can have a success rate of around 98% to 99%.

In other words, the concern is not simply whether a surgery is technically possible. It is also about whether the child reaches the hospital before the disease progresses to a stage where surgery can provide the expected benefit.

SMALL BABIES MAY NEED SURGERY EARLY

Another challenge is the belief that a baby is too small to undergo heart surgery.

Dr Sudhuri said this lack of awareness can be a major problem. Some procedures for children with complex congenital heart disease need to be performed within the first few months of life.

He cited situations involving single ventricle heart defects where procedures may need to be performed at around three months of age or earlier. Parents may hesitate because they feel the baby is too young or too small for surgery.

But in congenital heart disease, timing is often dictated by the disease rather than simply by the child's body weight.

Dr Sudhuri's message to parents is that if a child needs surgery on the first day of life, waiting until the child becomes bigger may not be safer. In some critical conditions, the baby may not survive long enough for that waiting period.

COST AND ACCESS REMAIN MAJOR BARRIERS

Even when a child is diagnosed at the right time, treatment may still be out of reach for some families.

Dr Sudhuri said financial problems remain a major issue in India. The cost of congenital heart surgery has increased as medical technology, equipment and treatment options have advanced.

Many hospitals perform surgeries at subsidised costs, but maintaining such services over a long period can also put financial pressure on institutions.

For families, the cost can become one more reason for postponing treatment.

EARLY DETECTION COULD CHANGE OUTCOMES

Dr Sudhuri believes India needs to focus on three things: early detection, early referral and treatment at the right time.

Greater awareness among parents and society is also important, particularly around the fact that a newborn being small does not automatically mean that heart surgery should be postponed.

He also stressed the need for greater availability and affordability of congenital heart treatment, including insurance coverage for congenital heart defects.

India has made considerable progress in paediatric cardiac surgery, but the benefits of that progress depend on children reaching the right centre at the right time.

For congenital heart disease, a delay is not always just a delay. In some children, it can mean arriving at the point where surgery becomes more difficult, the risks increase, or the treatment options become limited.

As Dr Sudhuri put it, the timing is critical: it is the disease that dictates when a child needs treatment, not simply the child's size or weight.