Rebecca and Oliver Gourlay, whose twin daughter Maya underwent her first surgery at only nine-days-old, can’t imagine how lonely their journey would have been without the support of the Heart Kids charity.
Maya Gourlay is a fighter.
After just 12 weeks in mum Rebecca's womb, her days were numbered.
But now she's 7 years old and although she has a myriad of health issues, along with cerebral palsy, she's as feisty as any other kid.
Maya is an identical twin, with sisterZoey, but she got the short straw during her time in the womb.
While Zoey had a seamless birth, Maya didn't get the full amount of nutrients she needed, weighing 700g less, at 1070g, than her sister when born near the end of her 32nd week.
She was so small her whole palm fitted inside her mother's engagement ring.
Together with husband Oliver, the couple discovered they were having identical twins at their 12-week scan and were warned of the impending complications.
That scan revealed that Maya was significantly smaller than her sister and after speaking to a specialist were told their chances of survival were not good.
"Because it was so early the likelihood of them surviving would be slim and we would expect that both would pass in the womb in the next few weeks."
It was a bombshell for the couple as they were due to get married in three weeks' time.
"We had been engaged for years and years and we'd booked the date and were working towards it and the twins were our happy surprise."
Instead, she went through their wedding day and honeymoon thinking their twins were dead inside her.
"So it was that whole 'okay, so at anytime during the honeymoon they could both die' and 'I'm walking around with two dead babies in me'. It was quite awful, quite horrendous, but we managed to enjoy the wedding day and honeymoon nonetheless."
Zoey, mum Rebecca, Maya, dad Oliver Gourlay and younger sister Emilia at home. Photo / Greg Bowker
They had a scan when they arrived back and discovered both were alive and doing well.
At 22 weeks they were again told to consider terminating Maya because she stopped growing for a couple of weeks. Leaving her inside the womb could affect Zoey or leave her brain-damaged.
"But by that point you're so invested in being a twin parent. It's so ingrained in you that the two of them are in there."
They knew Maya would be at risk of cerebral palsy, which she now has, but didn't want that to stop them from fighting.
"My husband and I talked about it and were like, 'if she's going to fight, and they were our first babies, we felt that it was our job to fight for them' so we said no thank you [about termination] and carried on."
At nine days old Maya was identified as having two life-threatening heart defects - including heart failure due to her aorta being too narrow - which required immediate surgery.
However, she was too small, so she had two patch-up operations to tide her over until she was the required 3kg.
"She was tiny. It was like operating on a chicken."
Twins Zoey and Maya Gourlay. Photo / Greg Bowker
Again, the family were told that she was going into heart failure again, and to prepare themselves for the worst.
"At this point she had so many operations, so many lines in her hands and intervention and the medical staff were like 'well maybe it's time to disconnect her and just hold her,' let her pass in peace, basically."
But, again they said no and to go ahead with the operation - and it worked.
She was keen to play netball with her friends but as she has little strength in her left arm, and tires quicker than other kids, they came up with a compromise of playing tennis instead.
Maya, who goes to Brown's Bay Primary School, said her daughter doesn't let her issues hold her back.
"[Maya] doesn't feel sorry for herself, she gets annoyed and just wants to do what everyone else does.
"With what she's been exposed to in her life, she's robocop. Half girl, half machine."
• Anyone wishing to donate to Heart Kids can go here
