After two years of fighting for his life, the parents of Jack Dwyer feel like they are finally getting to know the true personality of their little boy.
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Jack was born with a condition called VACTERL Association - a congenital disorder affecting his spine, bowel, heart and kidneys. He was also born with a large arteriovenous fistula, an abnormal connection between an artery and a vein, in the brain.
His first three months of life were spent in the neonatal intensive care unit at the Royal Children's Hospital, and his first major surgery was at just two days old but since then he's notched up three further bowel surgeries, brain surgery and two open-heart surgeries.
The fistula in Jack's brain had been picked up on ultrasound while mum Taryn was pregnant, but the other conditions were not discovered until the days after his birth.
After recovering from two major surgeries this year - on his heart in January and bowel in April - Ms Dwyer said Jack was finally feeling well, eating normally and had energy to do all the things little boys like to do.
"He's the best he's ever been since his last surgeries," Ms Dwyer said.
"He's pretty shy with people, probably because of the trauma, but he's really coming out of his shell, is more comfortable being out of the house, is eating and drinking really well and actually putting on weight.
"We are almost getting to know him again ... we are seeing his personality and he's a different child when he feels well.
"He loves car and trucks, is very much a boy and is very affectionate ... but now I'm barely getting cuddles any more because he's so busy."
Jack turned two this week.
The little fighter was born at 36 weeks, weighing 2kg, after Ms Dwyer had been hospitalised almost a month with pre-eclampsia during which her waters broke.
"They realised there were complications with his bowel and he was transferred to the Royal Children's Hospital where he went in for emergency surgery for a colostomy," Ms Dwyer said.
That was when he was just two days old.
Following that first bowel surgery Jack went into heart failure, prompting doctors to order multiple scans which revealed heart, spine and kidney issues in addition to the brain malformation.
While all that was going on, Ms Dwyer was still at the Royal Women's Hospital. She could not be at the bedside of her critically ill newborn son until he was five days old.
Scans revealed Jack had several holes in his heart, a plumbing issue known as left superior vena cava where part of the heart drains to the wrong place, and patent ductus arteriosus where an opening in the heart fails to close normally after birth.
Eventually, the cluster of conditions led to the diagnosis of VACTERL Association and many long stints in hospital.
"There's much unknown and ... his his cardiothoracic surgeon has only seen it once before it's so complex with so much going on," Ms Dwyer said.
And to further complicate matters, everything happened during COVID lockdowns which meant big sister Hannah, now three, didn't get to meet her brother until he was three months old.
"No one could meet him," she said.
Throughout Jack's heart surgeries, the family received support from HeartKids who celebrated their Hero for HeartKids fundraising and awareness day on Friday.
"They've even been there for us when Jack had other surgeries, not just his heart surgeries," Ms Dwyer said.
"Whether it was advice, a friend to talk to, gifts for Jack and his sister Hannah, or even food for us over Christmas when Jack was in the Royal Children's Hospital and had his second open-heart surgery ... HeartKids have been most supportive throughout it all."
During lockdown Ms Dwyer, husband David and Hannah stayed in an apartment near the hospital. Ms Dwyer's mother moved in with them, working from home and providing support, and Hannah attended childcare opposite the hospital.
They spent three months at the Royal Children's Hospital, then when he was at six months old he had brain surgery at Royal Melbourne Hospital in which coils were inserted to help close up the fistula, or hole, between a vein and artery.
There have been other illnesses and admissions over time, whenever Jack got sick, but just before Christmas last year he started losing weight, his oxygen levels were falling dangerously low, and he was admitted back in to Royal Children's Hospital.
A decision had to be made - to go home on oxygen, or complete the complex surgery to repair his heart.
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"With the last heart surgery, they couldn't tell me the risks," Ms Dwyer said. "Normally there's a 10 per cent chance of a brain bleed or stroke or complication but with Jack, because of his brain AVF, they couldn't give me a percentage because it's just so rare."
Thankfully Jack recovered well, and he battled through another bowel surgery in April to reverse the colostomy he has had his whole life.
"He's not completely out of the woods, he may need spinal surgery or more brain surgery, but for now it's wait and see.
"Finally we are starting to see some light at the end of it all."
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