Patrick Bennett was born with his heart facing back to front and a 5mm hole in the organ.
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He required a three-hour surgery at just ten days old, which for mum Loren felt "like a lifetime".
Now on Monday he will undergo the biggest challenge of his young life, a 13-hour double switch procedure to close the big hole in his heart and reconstruct the pulmonary artery.
"I'm so anxious it's not funny," Loren said while fighting back tears.
"Everyone keeps saying that he has the best surgeons and he's going to be ok, but still, it's my baby.
"My husband came home from Papua New Guinea because the surgeon said it was major surgery and even when he comes out of it, he's not out of the woods.
"They won't know that until about four days after which is when they'll make the decision on if he needs a pacemaker or not.
"Then after that too, if he doesn't need a pacemaker this time, there's still a 20 per cent chance that he'll need one in his lifetime."
Caring for Patrick does not come cheap either, with consultations costing hundreds of dollars.
That is why a donation page was set up for the family, so that they may have one less thing to worry about during this awful time.
As of Thursday afternoon, a little more than $900 had been raised.
"It's also the financial strain because my husband is self-employed so if he doesn't work we don't have any money coming in. We have six other kids to care for who will be staying in Orange," Loren said.
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"What people don't understand is there's a huge amount that you don't get anything back for.
"When we go and see our cardiologist, it costs us $450, when we see our surgeon it costs $450. We get a miniscule amount back from Medicare, our private healthcare covers nothing and his medication isn't covered.
"I think anyone donating anything is an amazing contribution to us and it means the world."
And although this won't be the last surgery Patrick ever undergoes, if successful, it will go a long way in giving him the life he deserves.
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Riley Krause
I am a senior journalist for the Central Western Daily. A jack of all trades, I cover everything from sport, to human interest stories and crime. Drop me an email at riley.krause@austcommunitymedia.com.au
I am a senior journalist for the Central Western Daily. A jack of all trades, I cover everything from sport, to human interest stories and crime. Drop me an email at riley.krause@austcommunitymedia.com.au
