Feature story

Heartfelt care

Children born with congenital heart disease in Chhattisgarh are getting the specialised treatment they desperately need

Bhuyash Rishi caught a cold when he was 18 months old. That by itself was not too worrying for his family, hailing from Durg in Chhattisgarh, but beneath the chill lurked danger. Doctors at a local hospital said that he showed clear signs of congenital heart disease, ‘double outlet right ventricle’ and ‘tetralogy of fallot’ being the causes. In plain terms, Bhuyash was born with a seriously defective heart.

The complicated surgery Bhuyash needed was unaffordable for his parents, who watched their son’s condition deteriorate for years before a lifesaver came into the picture. The child’s father, Harish Kumar Rishi, came to know of the Sri Sathya Sai Sanjeevani Hospital (SSSSH) and this was where Bhuyash found the care and treatment to repair and renew the most vital of organs in his body.

Located in Raipur, SSSSH has been an angel of hope and care for kids born with congenital heart disease (CHD). The hospital has treated more than 150,000 children and about 18,500 cardiac surgeries and catheter interventions have been done here. And all without charging a rupee.

Bhuyash’s case is typical. He was operated on free of cost in early 2021 and now, at 10 years, is able to lead a normal and active life. “It wouldn't have been possible to save my child’s life if this hospital hadn’t helped us,” says Mr Rishi. Enabling SSSH to play the part of healer and benefactor for Bhuyash and so many others has been supported from individuals and institutions, among them the Tata Trusts.

The sad fact is that countless children afflicted with CHD and hailing from financially distressed families are not as lucky as Bhuyash. It is estimated that more than 200,000 children are born with the disease in India every year, that uncounted thousands remain undiagnosed, let alone treated, and that a quarter of them do not make it past the first year of their lives.

A social and medical condition

The nature of CHD makes it a social and medical condition, with links to undernutrition and the lack of quality — and affordable — healthcare. That could explain why more cases of CHD are found in regions with poor development indices.

In central and north India, nearly 20 of 1,000 children are born with CHD, a lot higher than the India average of 8-10 per 1,000. Facilities for care and treatment are rare and immediate attention is hard to come by. (Chhattisgarh has some 2,500 children awaiting heart surgeries).  

The CHD challenge is compounded by the state’s struggle to ensure sufficient healthcare. Ten districts here are ‘developmentally challenged’ and there’s a large tribal belt far short of necessary healthcare facilities and trained practitioners, critical for early diagnoses and treatment.

CHD can be detected during pregnancy through an ultrasound scan for anomalies. Delayed identification of abnormalities after birth is more complicated. Diagnoses can be made if doctors are equipped with an echocardiography. Unfortunately, these are not easily available and too expensive.

Temple of healing

Bastar district in Chhattisgarh, a predominantly tribal area 290km from Raipur, does not lack for beauty or splendour. The same cannot be said of its healthcare facilities, where the shortfall in quality care and treatment is pronounced. This was the reality confronting the parents of Vasanth Korlapu (above) when they discovered that their three-month-old son had been born with a congenital heart condition that could take his life.

Vasanth needed urgent surgery but his family could not afford it. His father, a barber with a meagre income, had already spent more than 200,000 on medical bills, only to see his child’s condition worsen. Walking was impossible and even breathing became difficult for Vasanth, but there was little his debt-ridden parents could do. The family had almost lost hope when they heard about the Sri Sathya Sai Sanjeevani Hospital.

Vasanth underwent surgery at the hospital in March 2021 and the successful procedure has put him on the path to a healthy childhood. “My son is healthy and he is able to run and play,” says the child’s mother. “This is not a hospital; it’s a temple. Our child has been given a new lease of life at this temple.”

That’s the backdrop to the state government, in 2018, bringing in the Tata Trusts to work with its child health programme, Chirayu Chhattisgarh. The aim was to widen the reach and strengthen services for screening, early detection and treatment of CHD.

 SSSSH, which had set up the state’s first paediatric cardiac centre back in 2012, was already a government partner in Chirayu Chhattisgarh. The Trusts coming into the programme sowed the seeds for a fruitful collaboration.

The Trusts’ contribution to the effort involves three key aspects: training healthcare workers to detect and treat the condition, increasing the number of CHD centres, and funding surgeries for those who cannot afford it. SSSSH is crucial in this equation. “Sai Sanjeevani is committed to reducing the national burden of CHD,” says Ravi Kiran Sreepada, a programme manager at the hospital, who points out the no-cost benefit it provides. “We operate without bill counters at any of our centres.” 

Unique training module

Besides mainstream care, the joining of hands has resulted in fellowship courses — offered under the Tata-Sanjeevani initiative — to reinforce the capacity of health workers. About 60 doctors, nursing and support staff from government hospitals have completed these courses. “The Trusts have created a unique training module,” says Mr Sreepada. “They have tremendous management competencies and that ensures skill development in one of the remotest regions of the country.”

An infant recovers after surgery in Palwal

Narrowing the geographic gap between children and their treatment has been another priority for the partnership (some of Chhattisgarh’s outback districts are up to 10 hours from Raipur). The Trusts and SSSSH are setting up four satellite centres in district hospitals for more screenings. The centre at Jagdalpur District Hospital, in the south, is operational while centres in Ambikapur, Bilaspur and Rajnandgaon are underway.

This hub-and-spoke model — with centres attached to the headquarters in Raipur — is aimed at widening access for patients and their families through screening centres and telemedicine. While SSSSH is the key operating party, the Tata Trusts facilitate selection, preparation and designing of the centres, and provide support for procurement of equipment. The SSSSH team sets up standard operating procedures and works with doctors from district hospitals for referrals and consultations.

The community connect unfolds through outreach camps in villages to screen pregnant mothers using HD stethoscopes, which have integrated electrocardiogram and recording functions. The records and other data generated are shared with SSSSH for analysis. 

A crucial component of the initiative is funding of treatment for those who cannot afford it. About 850 children have undergone surgical or catheter interventions and some 11,400, have been screened for CHD. About 82% of the affected families are below the poverty line.

Most heartening is that the waiting list is slowly becoming shorter. It should be because there is so much more for these children to see and experience with, and through, their budding hearts.

* Names have been changed in this article