Dr Subramanian Chellappan is on a mission to save children with congenital heart disease and is conducting surgeries in the middle of a pandemic. By Ayushi Sharma

While the nation is grappling with the pandemic, it is difficult to imagine what new parents might be going through. The thought of bringing a child into the world is now not only filled with happiness but phases of fear, anxiety and protective angst. Particularly when the threat perception of other diseases over the newborn looms large, like Congenital Heart Disease (CHD). It’s common among infants and is caused by a structural defect in the heart.

Keeping in mind the urgent need to treat children suffering from CHD, Heart To Heart Foundation (H2H), a non-profit organisation, is providing free pediatric cardiac surgeries across the world even in the middle of the pandemic. In India, it has partnered with the Sri Sathya Sai Sanjeevani Centre for Child Heart Care and Research. One of the recent cases is about Ayush Kumar, son of Pawan Kumar Giri, who is a labourer from Bihar. He and wife Punita had their first and only child, Ayush, in 2015. While they were still celebrating the happiness of a newborn child in their lives, they got to know that their little one was suffering from Congenital Heart Disease. Given that the information on the subject is so less, Pawan and Punita were thrown out of their family home due to the child’s severe condition and had to struggle finding an affordable treatment solution. In March, they were informed about the treatment. After formal check-up, the child was admitted for immediate surgery. However, uncertainty struck again as the lockdown was announced. They patiently waited for over six weeks and as soon as the hospital resumed surgical services, Ayush was taken up for surgery on the first day. He went through an Intra Cardiac Repair for Tetralogy of Fallot. While Ayush was still in the post-operative ward, Pawan and Punita received a call from their parents apologising profusely for what they did and asking them to come back home. Certainly, life has a way of testing a person’s will. We talk to Dr Subramanian Chellappan, the man who gave hope to little Ayush.

Excerpts:

How did you manage to fight against all odds?

The COVID-19 pandemic and the lockdown have impacted all sections of society, particularly people with other morbidities. Children with Congenital Heart Disease (CHD) are one such vulnerable category. In India over 2.4 lakh children are born with CHD, which is one of the largest causes of infant mortality in the country, largely because this specialised treatment is inaccessible and unaffordable for most of the population. The magnitude of this problem, both in terms of affordability and shortage of hospitals addressing CHD, inspired me to conduct surgeries at minimal cost. Over the last seven years, we have established a scalable and sustainable unique model of providing world class pediatric cardiac care transcending economic barriers. To address this problem holistically, we introduced child health screening and ante natal care for pregnant women in rural areas. We also established a dedicated research centre for CHD with a vision to reduce incidence and better treatment outcomes.

We read the story of Ayush Kumar. Do such kids have the capacity to endure such diseases? How was your experience of healing him?

Congenital Heart Diseases are majorly life-threatening and incapacitating. Fortunately, most of them are amenable to cure. To begin with, these children limit their activities and exertional limits to a great extent but with time they gather strength. Interventions in the form of surgical treatments early in their life not only cure them but also put them at par with their peers in terms of a healthy livelihood in future. Majority of these children after surgical intervention have a normal or near normal life expectancy free of disability.

Children are priceless for their parents, families and society, no matter how old or moribund they are. Unlike other specialities, successful congenital heart surgeries are an outcome of good team work involving a lot of specialists — right from the operating surgeon to an intensive care nurse, who play a vital role in sending a child back home hale and hearty. Sometimes, these surgeries can be complex but the result is a corrected pathology, which enables an infant or a newborn to go through a normal healthy life. The speciality demands a great deal of patience, expertise, commitment and passion towards children.

Just as we clinicians strive to enable these kids to recover following surgery, they respond to treatment in a more predictable manner unlike adults whose reserves may be impaired to begin with. Children just spring back to life. The complexity of a heart disease, the sick state of the child and the sight of a parent carrying the kid to the operating theatres with a fear of uncertainty may put tremendous pressure on us but what is more gratifying is a sense of fulfillment and satisfaction when the child gets discharged. The fact that we could play a small role in giving a new lease of life and healthy livelihood to a child serves as the impetus for us to keep going.

Treating a heart disease amid the current chaotic situation, when all the other major illnesses have been out of focus, comes with its own roadblocks and concerns...

COVID-19 has severely stretched and strained India’s healthcare system as well as healthcare workers. According to CovidSurg Collaborative, a research network of surgeons and anaesthetists in 120 countries, including India, it is estimated that over five lakh non-emergency surgeries could have been delayed across the country during the lockdown period. We have a waiting list of over 5,000 children out of which most of them need urgent intervention. Doctors and management here took this bold step of resuming outpatient and surgical interventions given the need of addressing these children to avoid mortality.

You had to mobilise your pediatric cardiac surgical services. How challenging was it to do so?

The biggest challenge we continue to face is the uncertainty in terms of rising COVID cases and changing government protocols. The operational challenges, which we have to face every day, are:

• Despite various travel risks, several parents from all over the country arrive for treatment. Given 90 per cent of the COVID cases are asymptomatic, the challenge is to have protocols in place to protect both the staff and patient families from the virus and yet ensure seamless patient care.
• Testing children for COVID before surgery has become essential. With increasing cases of the Coronavirus, testing in itself has become a challenge.
• The lockdown has affected supply of consumables, medicines and servicing of equipment which hampers our work.
• Another important challenge is staff being exposed to COVID infection within and outside hospital premises, which can put the whole system at risk and hamper operations.

Against heavy odds, we still chose to embark on this journey.

What kept you going during the process?

The crisis led us to think innovatively in terms of developing new strategies in addressing patient care. During the lockdown period, we introduced pediatric cardiac teleconsultation and also proactively reached out to the patients through video calls by our cardiologists. Our teams developed in-house PPEs, masks and other protective gear as the supply was short. New infection control protocols were developed, right from outpatient department to post-operative care, in line with the national guidelines.

What is the extent of CHD cases in our country?

Despite these many children being treated, we still have addressed only the tip of the iceberg. For us, each child operated upon is special. It is a moment of truth when a mother hands over the child to the surgical team for an open heart surgery. It is here that the miracle of life happens. A new life and a new purposeful beginning is made. Life-threatening problems have transformed into life-making opportunities.