At six years old, Noah Dobson should be thinking about what mischief he and his mates are going to get up to, not where his new heart is going to come from.
Together with his parents Erin and Chad, and siblings Will and Lacey, Noah faces an agonising wait on the heart transplant list.
The Belmont North family could have as little as 6 hours’ notice to fly to Melbourne, should a donor heart become available.
How long that will take is anyone’s guess.
Noah has been in and out of hospital since he was born.
His parents first learned of his congenital heart defect – hypoplastic left heart syndrome – at Erin’s 20-week pregnancy scan.
Doctors presented two options: a medical termination, or a series of surgeries once Noah was born, culminating in a Fontan procedure, an open-heart surgery where blood flow is redirected from the lower body to the lungs.
“Straight up, a termination was out of the question,” Erin told Newcastle Weekly.
“As soon as [doctors] said there were things we could do; that there was a chance he could survive – we had to do everything we could.”
Noah was whisked away for his first scheduled surgery at Westmead Children’s Hospital when he was only four days old.
He pulled through, only to contract a blood infection at 10 days’ old, since he was also born without a spleen.
Doctors resuscitated Noah after he crashed in the intensive care unit.
What was supposed to be a four-to-five-week stay in hospital dragged out to three months.
At three months old, he wasn’t well enough to undergo his second planned surgery, so it was put off until he was 9 months, when he outgrew the first shunt and couldn’t wait any longer.
He surprised everyone and was back home at Belmont North in a week.
A leak in one of his heart valves landed Noah back in hospital at Westmead in March 2018, when he had a mechanical valve inserted.
The plan was still to carry out the Fontan procedure, but in November, Noah fell ill with fatigue and vomiting. Further tests showed a clot had formed over his mechanical valve – something that was supposed to be a permanent fix.
In December, he had a pacemaker fitted.
Not two months later – in February this year – Noah wound up in hospital yet again as his liver was congested with fluid after his right lung partially collapsed.
He was given an IV drug to help his heart pump blood, however, the Fontan procedure was no longer an option.
Without a heart transplant, Noah will not survive.
His family has turned to the public for help to cover costs. You can donate at gofundme.com/noah-needs-a-heart-transplant