Aru is one of the little Ambassadors for the 2023 Good Friday Appeal. At six years old, Aru greets everyone with a big, warm smile. She is intelligent and charming and will happily share her toys and chat about her games. But behind the brightness of Aru’s personality has been a difficult health journey that began when she was just six months old.
Aru was born a healthy baby however, at six months a family friend (and doctor) noticed that her breathing was faster than normal and recommended they get it checked.
The next day, the family took Aru to the GP and they suspected she had pneumonia and recommended a visit to The Royal Children’s Hospital (RCH) Emergency Department.
An initial chest X-Ray turned into a variety of tests through the night and the next day, Aru’s parents received heartbreaking news—due to a virus attacking her heart, Aru was in end stage heart failure.
Aru’s parents, Smital and Kiran, were in total shock.
“I remember Aru was admitted to PICU and a doctor called us into a room and asked us to take a seat. When they said she is in complete heart failure, my brain froze and everything around me froze. All I could hear was the beeping machines and my husband asking about a cure. After that I was awake but I lost all my senses. It took an entire week just to process all the information,” Smital said.
Aru was diagnosed with viral myocarditis and it resulted in dilated cardiomyopathy. Her little heart was so dilated that it couldn’t pump enough blood. Only a heart transplant could save her.
While she waited for a heart, Aru was admitted to the Koala Ward at the RCH where she had to be connected to a machine to support her heart. While staying in the ward, Aru and her family became connected to the other families on the donation waitlist.
“When we started staying in Koala I was so nervous but the nurses made us feel so comfortable. We had six other children waiting for hearts on the ward so we were all connected to each other. The children would come out in the hallways with their big Berlin heart machines and they would sit on the mat with their toys and play together. The nurses would even do their observations there to make them as comfortable as possible,” Smital said.
It took seven months before Aru received a new heart.
But it wasn’t all smooth sailing from there. Following the transplant, Aru needed endless physiotherapist, speech pathologist and occupational therapist appointments to get back on her feet. Once Aru learned how to walk, talk and eat with her new heart, her mum still felt something wasn’t right.
“Our life was somewhat going back to normal but slowly something didn’t feel right. My gut was telling me something wasn’t right,” said Smital.
In 2019, the family received more bad news.Due to Aru’s viral infection and anti-rejection medications, she was diagnosed with PTLD (a precancerous condition). Aru would again call the RCH home while she received treatment, this time in the Oncology ward, Kookaburra.
For eight months, Aru received treatment on the cancer ward and by 2020, was officially in remission.
Aru and her mum. Photo: Mark Stewart, Herald Sun
Having recovered from her heart transplant and PTLD diagnosis, Aru’s family’s relief was short-lived as the PTLD returned in 2021 and Aru needed to go through the treatment all over again. Aru’s treatment for PTLD was challenging however, she stayed positive and again made it to remission.
“The whole experience was a big commitment. I couldn’t go home for the entire time while Aru was waiting for her heart. I had to take a break from work until Aru was stable so my husband had to take a second job. We haven’t been able to visit our family in India for the past seven years due to Aru’s complex medical history.”
In 2022, Aru was diagnosed with PTLD for the third time, receiving the news just before Christmas. This time, the news came as more of a shock, as Aru had been doing so well with school and swimming and living a more normal life.
As the family look ahead to more treatment in 2023 and prepare to fight PTLD for the third time, Aru continues to live life with a happy spirit and a big smile for everyone she meets at the RCH.