Thomas (name changed) was a 17-month-old baby when he was diagnosed with long QT syndrome – a heart rhythm disorder that causes fast and irregular heartbeat. The condition would make him vulnerable to frequent loss of consciousness and an increased risk of cardiac arrest.
While he was not keeping well since birth, it took the family – from a village in Tamil Nadu – more than a year to recognise the actual reason for his deteriorating health. With a monthly income of less than Rs 15,000, the family neither had the financial resources to seek private healthcare nor a definite medical assistance from any government centre.
After months of worrying, Thomas' parents were finally referred to Dr Vijayakumar from Coimbatore. He suggested the immediate need for an implantable cardioverter-defibrillator (ICD) to be placed on Thomas' heart to regulate the pace of heartbeat. It was also a one-of-a-kind surgery, given that the device had to be placed on Thomas' heart, instead of inside it, due to his age.
Financial assistance for the surgery came from Genesis Foundation, an NGO, almost 2,500 km away, working for underprivileged children suffering from congenital heart defects (CHD).
Thomas' case is a reflection of how India approaches CHD – with delayed diagnosis and complete absence of government focus in both infrastructure and monetary assistance.
CHD in India – a Not-So-Uncommon Disease
At least one in every 100 infants born in India is diagnosed with some form of CHD – a set of defects that affect how a heart develops and functions.
According to a latest study, at least 2.4 lakh infants are born with CHD every year in India – 1/5th of whom are most likely to be in serious condition requiring immediate surgery within a year. Only about 10,000 of these patients get cardiac care, studies by Indian Paediatrics point out.
"In a district hospital in Tamil Nadu, there are 3,000 births every month. Congenital heart defects affect eight to 10 infants for every 1,000 births. So, imagine the situation in states where the fertility rate is high like Bihar and Tamil Nadu – an entire generation of infants with weak hearts, and going nearly undiagnosed. Even in some big cities, a paediatric cardiologist is unavailable after the birth."Dr Vijayakumar, Director, Centre For Paediatric Congenital Heart Disease, told FIT
Delay in Diagnosis: A Cause For Worry
According to the Centers for Disease Control and Prevention (CDC), around 97 percent of babies born with a non-critical CHD are likely to survive to one year of age and around 95 percent of babies born with a non-critical CHD are likely to survive to 18 years of age. However, early detection, where India is lacking, is most crucial.
"A neonatal specialist should check the newborn immediately after they are born. But this does not happen, especially when you move from top-tier cities. Parents are not aware that their newborn could have a potential heart disease, so they do not insist, but hospitals also do not have the facilities or expertise to diagnose, leading to a delayed diagnosis," Dr Vijayakumar told FIT.
Like Maya from Pune. She was born with two large holes in her heart and tricuspid valve. This particular valve ensures the blood flows in the correct direction. But the diagnosis came only when she was six years old.
Maya's father, who works as an auto driver, took her to many hospitals after she was falling sick at regular intervals, affecting her attendance in school. However, no one suspected a heart defect.
A routine health check-up at school was conducted, and it was here that she was detected with a murmur in her heart. Her case was immediately referred to a partner hospital of Genesis Foundation in Pune, where the child was detected with a rare and extremely challenging kind of congenital heart defect. Earlier this year, Maya underwent a surgery, and is currently in the process of healing.
"India has very limited number of specialists who can give the right diagnosis – and most of them are concentrated in tertiary paediatric centres, which also remain the only places which are equipped to deal with such cases. But 90 percent of India still lives in the villages, and dye to lack of specialised doctors, a large number of cases go completely undiagnosed, which will impact life in the long term."Dr Thakur told FIT
Heart For Heart: How NGOs Are Saving Lives Of Children
A surgery for CHD may cost anywhere between Rs 1.5 lakh and 6 lakh, or even more expensive, depending on how complicated the surgery is. The money for this has to come from the pockets of the parents themselves.
There are only a handful of NGOs that look out for children with CHDs – like Child Heart Foundation, Genesis Foundation, and Heart to Heart Foundation among others.
"My parents started this foundation in 2001, affected by losing their second child to CHD almost 40 years ago. They wanted to do their bit to ensure that money does not stop infants and children with CHD, from getting medical assistance. Today, we have tied up with 34 hospitals from across India, who intimate us as soon as they have a patient who need our support. We are also in the process of regularly organising screening camps – because delayed intervention is still better than no intervention. In a single camp in Kargil in July, we found 25 children with CHD."
Speaking about why government intervention is the need of the hour, Simran Sagar, who is the Director of Operations at Genesis Foundation, told FIT:
"There is no awareness among parents about what CHD is. So, there is anxiety not just about the health of their children, about their survival, but also about the money it is going to cost. They are worried if the child is actually going to be alright after the surgery, whether they will be able to meet the follow-up medical care. There are times when parents almost give up – especially when it comes to girl children because they say that they have other children to also worry about. If the girl child has to undergo open heart surgery, they worry about her marriage, whether she will be able to have children herself. We do a lot of counselling and take help from partner doctors. But it is most definitely time for the government to step in," Simran Sagar told FIT.
Lack of government policy also means stigma associated with CHD.
"There is this belief in many parts of India that a child with a hole in their heart is doomed for life. They treat that child as a liability, because they assume that it is easier and costs less to have another child. The financial help provided by government will play a role in eliminating this belief. When facilities are available for all, irrespective of how much they earn, lives are saved," Dr Thakur added.
Kerala's Hridayam Model – A Centralised Govt Scheme Needed
Like Dr Vijayakumar suggests, the government needs to focus on a three-pronged approach is the need of the hour:
Fixing the lack of awareness
Improving facilities at government hospitals to provide immediate care
Focussing on expertise, skills needed to address CHD
"All this can be possible through a uniform policy laid by the Central government, which is modelled on the basis of the Hridayam scheme in Kerala," the cardiologist told FIT.
Hridayam is a web-based registry for CHD cases across Kerala – which will help in monitoring the progress of children with CHD, identify the hospitals which they can connect to, and also offering the financial aid required for underprivileged families
"Once the case is registered on the Hridayam portal, it is referred to cardiologists identified by the government. They will categorise cases based on the diagnosis, clinical condition and urgency to do the case as per the predefined categories. In case of surgeries, they are allotted date and specialist within a specific timeframe. The policy has played a key role in eliminating the immediate anxieties associated with the condition," one of the cardiologists, who work on the scheme in Kerala, told FIT.