NGO Working for Congenital Heart Disease Children

Story of Heart Warrior Anmol - 9 months

2020 has been a hard year for all of us, some families along with fighting the virus also had to fight many personal battles in various forms, this is one such story. In the perilous times of the pandemic, Sunil Kumar’s family was under tremendous pressure as they had lost their only means of livelihood until a ray of hope came into their lives. Anmol was born on 20th of May 2020. This was when the pandemic had started moving towards its peak. 4 months into his birth , he was unwell due to cold and fever. During that time, when Anmol’s mother was feeding him one day, she found him uncomfortable, sweating and his heart beating really fast. She was extremely worried and took Anmol to the nearest dispensary where the doctor informed them that Anmol was very sick and was diagnosed with Pneumonia. The doctors also told them that Anmol had Down syndrome. Down syndrome is a genetic disorder that causes developmental and intellectual delays. The doctor asked the parents to take him to Pushpanjali hospital situated in Agra. The doctors prescribed lots of medicines that helped Anmol. Anmol’s father had to spend around 15,000 for one day for his treatment and all the tests done. A team of doctors had come to Pushpanjali to treat the COVID 19 patients. Suspecting some cardiac issue, they suggested Anmol’s father take him to Sri Sathya Sai Sanjeevani hospital in Palwal, Haryana. They did an Echocardiography test in the hospital. As the case seemed complicated, he was referred to AIIMS. He was confirmed with a heart disease but the treatment date was not given and due to pandemic, things were getting difficult.

Days went by and Anmol started getting sick by the hour, He used to constantly have cold, vomit and was severely underweight. His parents' anxiety was increasing everyday as they felt helpless. This was the time when Anmol’s father turned to the internet and started doing web searches about hospitals and organizations that could help him with his problem. This is when he stumbled upon the website of Child Heart Foundation. Given his experience from the past he was extremely skeptical about travelling all the way to Delhi and returning with a negative response. He started watching Youtube videos on CHF’s channel and was convinced about the services. He called our office and booked an appointment.

Anmol first visited CHF on 19th of December, 2020. He got a free Echocardiography test done and was diagnosed with Patent Ductus Arteriosus (PDA). Dr. Vikas Kohli suggested that Anmol had to get a PDA device closure. The estimated surgery cost was around 1,90,000. His parents got really worried hearing about the treatment cost as Anmol’s father had lost his job during COVID and his past treatment had exhausted him financially. CHF assured them that the funds would be raised and they would be contacted when the concerned hospital gives them a date. They travelled back to Agra from Delhi.

The time in between Anmol’s first consultation to his intervention was a real battle for the family. Anmol had repeated occurrences of fever, vomiting and there were constant issues during feeding. His mother was in constant touch with CHF staff and gave repeated instructions on feeding like getting a steel Paldai and feeding milk through it. She was also given a diet chart to fulfil Anmol’s nutritional needs. As young parents they were relatively less aware and were always high on anxiety as they used to call the team at every step for instructions. Our team was present for the family 24x7 over call. They even didn’t know who the local pediatrician was and the place to get a COVID test done. Our team also helped them get attested the income certificate as Anmol’s father was scared by the fact that the MLA had to sign it. There were also times when their travel has gotten delayed due to many external factors. But the costs were partially covered by CHF.

Their long journey of 2 months, with every step of helplessness and anxiety experienced by the parents, with constant support by the team at CHF they learned to deal with the phase with maturity. The amount of 1,33,000 was raised by CHF with Delhi South Rotary Foundation and got Anmol treated at Metro hospital, Delhi.