Fighting congenital heart disease: We hope our daughter could lead a normal life one day

I am Mangesh Sutar. My family—consisting of my wife and daughter—hail from Kumbharli village in Maharashtra's Raigad district.

When our only daughter Lavanya was a few months old, she would often become breathless and cry constantly. At the time, our hearts would sink with worry, and we would rush her to the nearby Anganwadi. 

After she turned one, we took her to a health check-up camp in our village organised by the Rashtriya Bal Suraksha Karyakram (RBSK), where a doctor suspected a case of congenital heart disease (CHD). 

He asked us to visit a Mumbai-based healthcare facility for Lavanya’s full check-up as she did not eat properly, and her weight and height had become stagnant.

One of our acquaintances, who had taken cardiac assistance under Swades Foundation’s paediatric cardiac care programme, helped us approach the organisation. 

The NGO assisted us in admitting Lavanya to Mumbai’s Wockhardt Hospital, where after a primary screening, the doctors informed us that Lavanya has a hole in her heart. 

Moreover, her case was complicated and would require multiple surgeries that would cost us nearly Rs 3.5 lakh. As a truck driver, I could have never gathered such a huge amount of money.

Speaking to a few other parents associated with Swades, we realised that the NGO is quite sensitive about kids and provides free-of-cost surgery and carefully escorts the child. And NGO Swades bore all the hospital expenses for our daughter, too. 

In 2017, Lavanya had her first surgery when she was one and a half years old, followed by a second surgery at three years old. 

Lavanya is now seven, and her heart is out of critical danger. She started eating well and is now gaining weight. 

Post-COVID, her case is now referred to Jupiter Hospital in Pune, which she visits every six months for follow-ups. Although Lavanya’s heart has withstood two surgeries, it still needs to become stronger. She avoids going out to play, and she needs to undergo another heart surgery soon. 

With a third surgery due, Swades will bear a portion of the surgery’s cost and would also pay between Rs 18,000-25,000 for post-operative care, including food and transportation costs for three follow-ups to its partner hospital.

A Swades health team representative escorts the patient and their parents to the partner hospital, where they coordinate on behalf of the family with the hospital staff for smooth process flow.

They ensure counselling for parents as they are usually terrified in such situations. After the surgery is completed, the representatives also keep in consistent touch with the patients’ families to address their urgent needs.

While we try to be careful, Lavanya attends school regularly and fares well in her studies. She likes to dance too. We hope for her to be hale and hearty, and that one day, she could play like other children and lead a normal life.