When Emma Baker was told at 24 weeks pregnant that her soon-to-be born son would have a rare heart condition, she had no idea what her child would experience in future.
At the time, doctors advised her that her son Noah would undergo open heart surgery at four weeks old; a thought that left the mum-to-be “terrified”.
Now four, Noah has braved 12 surgeries — many of which had complications — and faces a life with many more to come because of his Truncus arteriosus diagnosis.
Truncus arteriosus is a rare, congenital heart defect where a single blood vessel comes out of the right and left ventricle of the heart, instead of the usual two – the pulmonary artery and aorta.
It is rare for babies to live for more than a few months with the disease, and Noah also suffers from the complications arising from his multiple surgeries.
Ms Baker and her husband Sean had worked tirelessly to keep their son alive, at great personal and financial cost, until they were hit with yet another tragic diagnosis.
Sean, 35, was diagnosed with Stage 4 bowel cancer and liver metastasis in late October last year.
His bowel was almost completely blocked by the tumour and needed urgent surgery.
“I was shocked. Sean was as pale as a ghost … and he looked terrified,” Mrs Baker, 35, recounted.
“I just thought ‘This can’t be happening. We have a sick child’.”
After his surgery, he was told his cancer was incurable and Mrs Baker and Noah had to prepare for a life without him.
After Mr Baker began chemotherapy, Mrs Baker — who was only working two days a week at the time to care for Noah — left her job in aged care to also look after her husband.
Sadly, Mr Baker died at the family home in Seaford Meadows in his wife’s arms on December 28 last year.
“I told him how amazing he is and what an amazing dad he is and thanked him for everything he’s done and given me and Noah,” Mrs Baker said.
“(I said) how proud I was because he promised me the day he got diagnosed that he was going to fight to the end and not give up, even though he was in a lot of pain.
“It’s hard to put into words the kind of love we have.
“I miss him terribly and I think I’m still very much in shock that he’s gone.”
On New Year’s Eve, three days after Mr Baker died, Mrs Baker recounted how her and Noah stood outside of their home to watch fireworks.
“The sky was clear and you could see the stars … I said ‘Daddy’s watching us’ and Noah looked up and said ‘Daddy’s in the sky’,
“It broke my heart into a million pieces.”
Mr Baker was remembered by family and friends at a funeral last week.
The now single mother, who had been the main carer for Noah while Sean worked to support the family, faces a huge financial burden, having to cover funeral costs, medical bills, a mortgage and other household bills.
“We said to ourselves, in regards to Noah, we would do everything in our power to keep the house because it’s where our memories are,” Mrs Baker said.
“We’ve had some beautiful times here and then when Sean was diagnosed it became two-fold because that’s where our memories with him are.
“Noah knows it’s his home and I think it would be cruel to up and leave because we can’t afford to be here so it’s quite a tough position to be in.”
A GoFundMe page was set up last November and aims to raise $100,000 to help Mrs Baker care for her son.
So far, almost $67,000 has been raised.