When Claudine and Dave Fitzgibbon learned their unborn son had Spina Bifida, it was a heartbreak beyond what most couples will ever endure.
For it wasn’t the first time they’d heard a doctor utter those devastating words.
As will be told on tonight’s episode of Australian Story, little Harvey was their third successive child to have been diagnosed with the incurable congenital condition.
The couple, who had given birth to a healthy girl two years earlier, had made the harrowing decision to terminate their first two pregnancies, rather than let their children suffer with the debilitating consequences. But once Harvey was conceived a revolution had occurred.
A team of surgeons at Brisbane's Mater Hospital performed the first in-utero surgery on a baby with Spina Bifida ever conducted in Australia.
The following month, on August 26, 2016, Claudine and Harvey would become part of the second.
The neo-natal surgeon at the helm of this incredible procedure was Dr Glenn Gardener.
Speaking to Mamamia ahead of tonight's program, the Brisbane-based doctor said the couple's case was not unusual, in that multiple SB-affected pregnancies do occur.
"But to have a third pregnancy affected despite doing all the right things, being very healthy and taking folic acid at a high dose, it was just tragic, really," he said. "There wasn't an identifiable genetic problem, and I think they felt that surely it couldn't happen again when they wanted to have another baby, and it did."
But within four weeks of meeting Dr Gardener, after rigorous assessment, counselling and consultation, they were offered what they had desperately been searching for: hope.
Roughly 50 Australian children are diagnosed with Spina Bifida each year, normally during the 18-20 week ultrasound, and more than 5000 adults are currently living with it.
"It's a complex and challenging condition," said Dr Gardener. "Many [sufferers] will have problems walking and may be confined to a wheelchair to mobilise. Some will require operations to drain the fluid build-up on their brain, and many will have bowel and bladder incontinence for life.
"In saying that, many of them are living very happy and productive lives."
Thanks to the team at the Mater, eight-week-old Harvey is expected to be among them.
"I saw little Harvey on Saturday night," Dr Gardener said. "He's fantastic. He hasn't needed any treatment for fluid on the brain, which is great so far. His little legs are very active - so he's got good leg movement and no apparent nerve problems.
"He's got some growing up to do, of course. But so far, he's looking really great."
The surgery, pioneered by Vanderbilt University Hospital in the US and since conducted three times locally, allows doctors to intervene during a small window in the mother's pregnancy - between 22-25 weeks - in order to help minimise damage to the child's spinal chord.
The 2.5-hour procedure involves anaesthetising mother and baby, then opening the womb to allow access to the baby's back. The neurosurgeon then steps in and, with the assistance of a plastic surgeon, closes the Spina Bifida. Once that's complete, Dr Gardener replaces the amniotic fluid and closes the womb and the abdomen back up again.
It's early days, but Dr Gardener says the results of the first three surgeries seem promising and reflect the outcomes the pioneering US team has observed.
"Twice as many children will be able to walk and you halve the number of children that have problems with fluids on the brain. So there are really significant life-long benefits by having this surgery," said Dr Gardener. "Of course, you have to balance with that the risks of the procedure, so it's not for everyone."
Chief among the risks is possible early delivery. With this in mind, Dr Gardener and his team complete a full dress rehearsal of sorts the day prior: scrubs, gloves, realistic time-frame and a pregnant mannequin carrying a Spina Bifida-affected foetus.
"Obviously, it's a big complex operation that involves operation on the mother's womb, so it also has to be carefully controlled," he said.
"It's a lot for parents to contemplate the surgery, and I think these parents are very courageous. But when they look back I believe they'll think, 'We did the right thing.'"
Claudine and Dave are already among them, and it won't be long before they're joined by other parents of Spina Bifida affected children.
"This is a choice now in this country that they haven't had before," Dr Gardener. "I think that it's great that we can now offer this option for Australian and New Zealand parents."
Australian Story: The Hardest Choice airs tonight at 8pm AEDT on ABC and iview.