THE moment baby Jhanvi Permalla and her family were told she needed an organ transplant to survive, their lives changed forever.
When Robinvale local Jhanvi was born in 2021, she was severely jaundiced and was diagnosed with a rare and serious condition called biliary atresia.
The condition caused scarring and damage in the newborn’s liver by blocking the bile ducts.
After an unsuccessful nine-hour kasai procedure at 29 days old, baby Jhanvi and parents Vino and Beejay Permalla spent the first six months of their new life in hospital.
Jhanvi was then transferred to the Royal Children’s Hospital and was placed on the organ transplant waitlist.
Ms Permalla and Jhanvi lived permanently in hospital while Mr Permalla stayed in Robinvale to work, putting even more emotional pressure on the family.
Ms Permella described how difficult being on the waitlist was.
“I would pray for Jhanvi’s health every day, but I couldn’t pray for a transplant,”
“I would say to the nurses, I don’t want to talk about it. I couldn’t think about what another family might be going through,” she said.
As months passed, Jhanvi’s health deteriorated quickly and her only chance of survival relied on a transplant becoming available.
When it seemed there was no hope left, the gift of a donor liver came in the middle of 2022.
At 10 months old, baby Jhanvi had a successful transplant procedure and she is now four years old.
“She is the sassiest, happiest, most perfect little girl. She loves school and she is an absolute warrior,” said Ms Permalla.
While Ms Permalla was a registered donor long before baby Jhanvi was born, Mr Permalla and their other family members had not thought about organ donation until Jhanvi’s transplant.
“My husband didn’t know anything about it, he would say they probably don’t need mine anyway,” Ms Permalla said.
After their baby was saved by a transplant, Mr Permalla set out on a mission to get as many people to register as he could.
“I say to my friends if you want to live forever, register to be an organ donor!”
“Or I say, what are you going to do when you’re dead anyway?” Ms Permalla said.
The Permalla family described how their perspectives changed when Jhanvi’s life suddenly relied on a transplant.
“I think a lot of people just don’t think about it until it happens to them,” she said.
There are currently more than 1800 Australians waiting for an organ transplant with an additional 14,000 people on dialysis who could benefit from a kidney transplant.
In Australia, anyone aged 16 and over can register on the Australian Organ Donor Register.
It takes one minute online at donatelife.gov.au/register-donor-today or via the myGov or Medicare app.
The Permallas are vocal about their gratitude for their donor family and are committed to raising awareness about organ donation.
Jhanvi is currently in hospital receiving chemotherapy with post-transplant lymphoproliferative disorder.
However, the family remains as optimistic as ever.
“She will be okay, it is treatable. It’s not like before where she was in a life-threatening condition. She’s a trooper now!” Ms Permalla said.
People can follow Jhanvi’s story on Instagram @jhanvino_.
The bio says, “I received the best gift from my superhero to live this life to the full. I will choose kindness over anything in this life”.
