Almost three years after her life-changing operation, little Aradhya, fondly called Aru, is active and full of life. But under the shadow of the coronavirus, the three-year old, who had a heart transplant at six months of age, is pretty much in lockdown like everyone else, and nursing a stress line fracture in the leg.
Aru, born to Smital and Kiran Rathod, is resilience personified, and although her young life till now is marked by visitations to hospital, there is much to learn from this ‘chatty, bubbly girl’.
Sharing her story, Smital says Aru was just six months old when they went over to a friend’s place for dinner. The friend, who happened to have a medical background, noticed that Aru’s heart was beating faster than what appeared normal. She suggested they take Aru to a doctor the next day.
What they discovered at the doctor’s was beyond comprehension at the time. The shock was unimaginable. Little Aru, who was born perfectly healthy, had a heart that was failing. She suffered from a virus that weakened the heart making it unable for her to pump blood to all the organs.
The only option was a heart transplant. It is the stuff nightmares are made of. But the Rathods kept their faith.
Within six months, a match was found. “We consider ourselves very lucky,” says Smital, as someone else she knew waited for more than a year to find a match.
“I was so happy, it was a second chance in life for our baby,” says Kiran.
Aru endured eight hours of surgery and she did fine post operation. And no one anticipated what would happen after 13 days.
“It was in the afternoon, Aru was fine and we were playing with her. The doctors told us we could go grab a coffee as they were preparing to remove her temporary pacemaker, which is placed outside her body,” recalls Smital. “No sooner had we stepped out than we got a call. Aru went into complete heart block and they had to revive her. It all happened within that 15 minutes of us stepping out.”
The result was that the doctors had to open up her chest again and put a permanent pacemaker to prevent any blockage in the future. “It is a the rarest of cases and they don’t know the reason either.”
The pacemaker doesn’t bother the parents. Says Smital, “She has braved far more things.”
There’s been nothing ordinary about the hospital under the shadow of the coronavirus, but for parents such as Smital and Kiran being with Aru has taught them to hope what life reconstitutes on the other side of catastrophe.
Aru was also recently diagnosed with post-transplant lymphoproliferative disorder (PTLD) after she complained of stomach pains, says Smital. “Because of her critical medical history, they did all her tests immediately and when the results came back, they said she is in the third stage otherwise they would have considered her case as lymphoma, which refers to a type of cancer.”
It is a remarkable sign of Aru’s resilience, she notes. She manages to emerge strong after being on the brink each time.
According to protocol, Aru has undergone immunotherapy to treat her PTLD and is right now under remission. “But it can come back anytime we are told as she carries the Epstein-Barr virus (EBV),” rues Smital.
Right now, Aru is in recovery from a fracture in her leg which she got due to her medication of steroids and other cancer drugs which makes her bones brittle. “She’s OK but needs to avoid jumping and physical activity for her bone to heal. We have to be very careful, let her heal and then we will see in one’s month whether she needs an MRI scan to check her bone density and whether there is any infection or tumours in her bones. All her other functions are stable at the moment.”
On the whole, Aru’s recovery has been remarkable. Smital attributes it to all the support system that she found in the hospital and her own networks.
One afternoon, Smital recalls being visited by captains of the Starlight Children’s Foundation. The captains sang and played music to a delighted Aru who was strapped into life-saving equipment, compromising her mobility. She took to them instantly. Interestingly, Starlight is an organisation that has a straightforward mission: to brighten the lives of seriously ill children and their families.
If there is one that Aru looks forward to as a treat, it is her time with captains of Starlight at the hospital, who she now considers her “favourite people”. While Aru has her play time, Smital takes her time to indulge in some art and craft.
“If you want to cheer up your child, the captains are the best people. We take Aru to the hospital every month and going to the Starlight room is a treat for her. It works all the time as she is good through her sessions with the doctors.”
The Rathods have been in Australia for 11 years. They met here, fell in love and got married. When Aru was born, it was their first bundle of joy. Together they continue to inspire caring for their only child. While Smital is the full-time carer for Aru, Kiran is the sole bread earner.
But with their life centred around the hospital, the Starlight captains are truly a blessing in disguise for them.
Smital also has a word of advice for parents going through similar predicaments: “Hang in there. Sometimes you feel you won’t be able to get through but just think about positive things. When you see your child happy, you will forget everything.”
You can donate at starlight.org.au to help Starlight continue to bring happiness to seriously ill and immunocompromised children like Aru
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Almost 3 years after her life-changing operation, little Aradhya, is active & full of life. But under the shadow of the coronavirus, the 3-yr old, is pretty much in lockdown like everyone else & nursing a stress line fracture in the leg. #TheIndianSunhttps://t.co/ZyVNbtuT5Q
— The Indian Sun (@The_Indian_Sun) July 4, 2020