TUBES were draped over little Ayden Bird's lifeless body as he lay in a swaying ambulance stopped in the middle of Sydney traffic last week.
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The five-year-old was losing blood, and losing it fast. Paramedics were forced to perform another frantic blood transfusion, this time, with speeding cars and trucks flying past.
It was one of six Ayden would endure in just 24 hours.
As she held up the medical equipment above her son's body, Jodi Pointon's mind wandered to the journey that led them to that moment.
"I just kept thinking to myself, I can't lose him," she said.
"I had these flashes of how hard it's been all we've been through how strong he's been all this time."
Ayden's story was first shared by the Port News which revealed the little boy was bullied because of jaundice, a greenish tinge of the skin, resulting from his condition Biliary Atresia.
The rare disease destroys the liver, and without a transplant, there's no telling how long Ayden will survive.
The youngster was placed on the transplant list just after he turned one year old.
But an internal rupture and severe bleeding recently left him fighting for his life – making a liver transplant all the more urgent.
“The doctor told me - back when they couldn’t stop the bleeding - that without a new liver Ayden wouldn’t survive,” Ms Pointon said. “The thought terrifies me, the more sick they get the less of a chance they have.”
Ayden and his mother could now be living in hospital up until Christmas, anxiously awaiting the life-changing surgery.
It should have been the moment they’d been waiting years for. But the horrific circumstances leading to his current condition have made it all wrong.
“He was so pale, it was hard to tell where his lips were,” Ms Pointon said of his condition last week.
The toddler was flown to Westmead Children’s Hospital last Monday after his father realised he was secreting blood.
Since then, Ms Pointon has maintained a bedside vigil: “I keep telling him he’s like a car with a broken part that needs replacing,” she said.
“I told him he’s had enough grease and oil change and he can’t leave me.”
Most children with Ayden’s condition, she said, had a transplant before they were 12 months old.
The desperate wait to find a matching liver for her son has been a painful glimpse of the impact low organ donor rates have in Australia.
The nation’s deceased organ donation rates are among the worst in the developed world.
“The donor rates are just so low,” she said. “It really comes down to the families. People don’t want to think or talk about it, but they need to.”
The emotional and physical strain of the last few days are taking a toll Ms Pointon’s usually happy little “cheeky chomps”. “He is so unhappy,” Ms Pointon said yesterday. “He won’t talk to anyone, he won’t even look at me. It’s breaking my heart.”
Ayden’s cousin has established a trust fund for those who would like to help cover his ongoing medical costs under: BSB: 012-714, Account Number 283771496, ITF Ayden Bird ANZ Bank.
