‘When my son was in hospital, I prayed for one miracle. I can now see four’
By Mary Ward
On a Saturday in early 2016, Mumbai city implemented road closures to allow the delivery of a heart, kidneys and liver awaiting recipients without being stuck in traffic.
Deyaan Udani, a seven-year-old boy from western Sydney, had just become India’s youngest organ donor. His name was splashed across The Times of India and the TV networks soon caught on.
The Udani family was praised for their decision which saved the lives of four people, including a girl Deyaan’s age who received a life-saving heart transplant.
In 2016, Rupesh and Mili Udani’s son became India’s youngest organ donor. Now, they encourage other people from South Asian faiths in NSW to register themselves. Credit: Wolter Peeters
But in their room at the hospital, Deyaan’s parents, Mili and Rupesh, were oblivious to the growing media storm outside.
In fact, they were reconciling from a major disagreement. The act which saw their son hailed as a hero nearly did not happen.
“I could see Deyaan’s heart beating properly. I could hold his hand. I was saying, ‘Look, Mili, his heart is pumping,’” Rupesh recalled.
“Even when all the doctors declared him brain-dead, I had a hope he would make it. I was telling Mili, ‘No, no, no, we can’t do this at all.’ It was my ignorance. I didn’t want to believe it.”
The preceding week had been nothing short of a nightmare for the young western Sydney family, who had travelled with Deyaan and his older sister, Naisha, to visit relatives over the summer school holidays.
In 2016, Deyaan became the youngest ever organ donor in India.
On the final days of their trip, Deyaan had started complaining of a headache. As the family prepared to leave for the airport for their flight back to Sydney, Deyaan’s condition deteriorated. The family instead rushed to the hospital, where they learnt their previously lively, sport-loving and completely healthy son had suffered a brain haemorrhage.
An agonising four days of procedures and assessments followed. There were second and third opinions from doctors in India, and calls to family friends who were doctors in the US and the UK.
In the middle of it all was a moment of hope. Deyaan woke up.
A nurse told the family: “Your son is awake, but he is asking if he is in Sydney?”
Naisha, previously barred from the hospital because children were not allowed as visitors, was granted special permission to see him. But it was short-lived.
“I think, personally, he woke up just to say his goodbyes,” Mili said.
It was day six by the time they were told by a panel of doctors that nothing could be done. The damage was irreversible and Deyaan, days from returning to class at Quakers Hill Public School, was brain-dead.
“It’s not like a heart attack where everything stops. The other organs are functioning but slowly the messages start dropping off,” Mili said. It was then that the hospital suggested that Deyaan was a rare candidate for paediatric organ donation.
“That’s when it struck me that, yes, he had spoken about organ donation. They had learnt about road safety in school and spoken about it and he had said he would,” Mili said.
Rupesh and the family in Mumbai were against it. As an adherent of Jainism, with a belief in reincarnation after death, Rupesh said he had concerns about the implication of his son losing his organs.
“I felt like a horrible monster of a mother because I was the only one saying yes,” Mili said.
A call to their guru in Sydney shifted Rupesh’s position.
“He said: ‘There’s nothing that says you can’t do this. It is the highest form of gift one can give, the highest form of donation,’ ” Rupesh recalled.
Forty-two per cent of NSW residents are registered organ donor, but in parts of western Sydney, home to more culturally and linguistically diverse communities, that figure is much lower.
Every major religion allows organ donation – including those that believe in reincarnation.
In the years since their son’s death, the Udanis have sought to raise awareness of organ donations and increase donor registrations among their Jain community in Sydney.
For the first time this year, the event, known as Saffron Day, is open to the public, with a five-kilometre bike ride and community day at Bicentennial Park on Sunday. For the Udanis, saffron has three meanings.
“Deyaan’s favourite colour was orange, but also saffron is on the tricolour flag of India which symbolises a sacrifice,” Mili explained. “But there is also saffron the spice. And the thing about saffron is, just a pinch goes a long way. Just registering as a donor could change someone’s life.”
From left: Mili Udani with her daughters Nishtha, 3, Nami, 5, Naisha, 17, and her husband Rupesh. Credit: Wolter Peeters
Mili says she remembers those dark days in the hospital more than seven years ago when she was praying for a miracle. In the end, she said, she received miracles for the three children and one adult who received a new chance at life due to Deyaan’s donation.
“I was praying for one miracle, but I can now see four.”
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