Wollongong nurse Tenille Pratt was very hurt when a doctor colleague chastised her for not terminating her pregnancy because the cost of treating a baby with a severe heart defect was “a waste of medical resources.”

Tenille’s first child, Julian, was born without a left ventricle in his heart, and during his brief 40-day life span endured three major surgeries and numerous other medical procedures.

Julian never left hospital and Tenille got to cuddle him only three times, the final time the night he died after they switched off his respirator.

And yet Tenille has no regrets about defying medical advice to terminate, nor any regrets about choosing to go ahead with the surgeries rather than just bringing Julian home to let him die.

Tenille, who now works as a school nurse and attends St Michael’s Anglican Cathedral, Wollongong, south of Sydney, says she never considered terminating a sacred life God had given her.

“As far as I’m concerned …  [abortion] is murder, and we’ve got no right to make those decisions, or to judge what somebody’s quality of life is. God has made them that way for a reason,” she says.

“The thing for us was what plans did God have for our child, and for us and that journey.”

It was hard to decide which path to take after the birth, with a cardiologist telling them there was a 85 per cent chance he would survive the first three surgeries, although with a likelihood of intellectual disability from the reduced oxygen flow.

“I guess part of [our decision] was our selfish desire to see him survive … but also we didn’t want to assume that the skills that our surgeons have are there for no reason.”

Tenille and her husband Richard had to move to Melbourne to access the specialised surgical skills required to treat Julian.

“I remember very early in the piece I said to the chaplain down there: ‘How do you know when enough is enough?’ ” she says.

“He didn’t hesitate for a moment and he said ‘In my experience mothers always know.’ And with everything that came up, I questioned is this the point, is this the point? But there was an instinct and we’ve even caught it on a photograph. There was this look in his eyes where it was enough is enough and that was at 5 o’clock the night before he passed away. We chose to stop active treatment then, and we turned the machines off the next morning. It was very clear he no longer looked comfortable; he looked uncomfortable and distressed.”

Tenille says the hardest moment in Julian’s journey was also the easiest.

“The moment we decided to turn off his respirator was the easiest decision I have ever made; I can only attribute this to God – he gave me a peace in that moment that this was the only course of action. But at the same time it was the hardest decision to live with.”

For all her heartache and grief, Tenille considers herself blessed in having known Julian.

“It’s really how much of a gift he was, even though he had limited capacity to touch and grow as a family. I grew as a person; I’m a stronger person because of it. My faith is stronger. Some people say ‘I can’t understand how you can still trust God,’ but I couldn’t have got through it without God, I couldn’t have survived it.”

As an emergency nurse, Tenille found it horrific and humbling “to sit there for 40 days and not be able to do anything to help the person I care about most in the world.”

“It also made me turn my focus back on God, that he is my strength; I can’t lean on my own strength,” she says.

Importantly, the searing experience  opened up doors that would otherwise be closed.

“We had lots of people at my workplace who had never prayed before and we put out prayer requests. Now their understanding of how to pray was very different, but they could see how we responded differently to this medical emergency to other people they had seen in the hospital environment.

“And it does open a door because it’s not something that lots of people talk about but the more you put out there that you’ve lost your child, the more people come up and say ‘We’ve had a similar experience,’ and they feel that they can talk to you because you know what they’re going through.”

Tenille and Richard now have four daughters: Jadzia, 8, Anastasia, 7, Zanita, 6, and Annikka, 4.

“We were so blessed in knowing [Julian]. It makes us cherish every moment with our other children, every small step,” says Tenille.

“They’re a gift from God and God has designed them wonderfully and perfectly.

“The pain doesn’t diminish; you learn to live with it. Time doesn’t heal, it just promotes growth; you grow to understand and accept and move on.”