How long two-year-old Jack Kenny must wait for a vital heart transplant could be anyone’s guess.
The last transplant to take place on the ventricular assist device ward at The Royal Children’s Hospital in Melbourne, where the toddler is receiving treatment, was in July last year.
Jack’s family, originally from Nelson Bay, was forced to move to Melbourne in November when his condition declined.
Diagnosed with cardiomyopathy at seven months, Jack’s parents Victoria and Pat already knew their son’s heart was under stress.
This is a condition in which the heart is unable to pump blood properly due to disease in the muscle tissue. There is no cure.
One morning in November, Jack woke looking pale and listless and wouldn’t eat or drink.
A concerned Victoria took him to a GP, who recommended she take her son to John Hunter Children’s Hospital.
Jack’s condition deteriorated and he was airlifted to the Paediatric Intensive Care Unit at Westmead, where doctors feared the worst.
He spent 10 to 12 days there, being monitored by a team of specialists and receiving heart and lung support from an ECMO machine.
“He kind of came back to consciousness but he still wasn’t himself,” Victoria tells Newcastle Weekly.
“When things got worse, [the medical team] decided they weren’t taking any chances and made arrangements to airlift him to The Royal Children’s Hospital in Melbourne.
“That was confronting for us because we knew it was the last stop before a heart transplant.”
Victoria, Pat and little Jack have been in Melbourne ever since.
They are one of eight families currently staying in the ward where other children also await heart transplants.
The next heart available will go to the most suitable candidate.
Jack is hooked up to the ventricular assist device 24/7, which helps the left side of his heart pump blood.
The family can only go outside for 30 minutes at a time, while the device runs on battery power.
While the Heart Foundation has put them up in an apartment for the duration of Jack’s treatment, the family still has a mortgage to service at home with no active income, and a second baby on the way this week.
To help, a work colleague of Victoria’s has established a GoFundMe page to which people can donate to help cover the family’s costs.