The high-tech ECMO machine saving lives and giving families a chance to make memories
Five-week-old Sidney Mahony lies in his mother Ashleigh's arms on a secluded balcony at the Queensland Children's Hospital on a summer's day in February.
It's 3pm and time to say goodbye — way too soon after their first hello.
Dad Lonni is here and Sidney's older sister Tully, then still a toddler.
Other family and close friends have also arrived.
Some of the hospital team who have cared for Sidney since his birth with a rare and severe heart defect are among the 20 or so people who have made their way to the hospital's seventh floor balcony, to support his family as he takes his final breaths.
"It was a beautiful day," Lonni recalls, three years later.
"Brisbane couldn't have turned it on any more."
For most of his life, Sidney was attached to a machine known as ECMO — an acronym for extra-corporeal membrane oxygenation, a high-tech heart and lung machine.
At the end, it's what allowed his parents some precious extra time to make memories with their baby boy.
In other cases, such as 15-year-old Sunshine Coast teenager Byron Blackmore, it saved his life.
Sidney and Byron are among more than 270 children who have been treated with ECMO since the Queensland Children's Hospital opened in 2014.
ECMO patients are so critically ill, only about two-thirds survive.
The hospital's three heart surgeons are the only medical specialists in the state qualified to place children on the machine, which has become a treatment of last resort.
Queensland Children's Hospital director of cardiac surgery Nelson Alphonso says intensive care specialists will typically call on heart surgeons to place a child on ECMO in cases of severe heart or lung failure, or a combination of both, when all else has failed.
"They only call us when the patient is really at death's door, to come and intervene," Dr Alphonso says.
Occasionally, they'll move the baby to the operating theatre to connect them to the ECMO machine.
But in most cases, there's no time.
"The children are too sick to be moved and so we will place them on ECMO where they are," Dr Alphonso explains.
"In some instances, we have to open the chest in the paediatric intensive care unit (PICU) and connect the baby to the ECMO machine.
"Sometimes we put patients on when they're in a cardiac arrest situation, when they're undergoing chest compressions and being resuscitated."
Sidney was about a week old in early January 2022, when he was first put on ECMO after being born with hypoplastic left heart syndrome, also known as "half a heart" because the left side of the heart is severely underdeveloped.
He was also born with only one kidney.
Towards the end of open-heart surgery to re-plumb his heart's right chamber — allowing it to take over completely from the underdeveloped left side — he suffered an unexplained leak in a key heart valve.
Dr Alphonso had to repair the valve on the operating table.
When Ashleigh and Lonni finally saw their baby after the operation, he was connected to ECMO — a machine several times his size.
"I didn't really know what to expect," Ashleigh says.
"There was a lot of blood … just seeing blood going through tubes, an open chest.
"I know that they explain it to you, but when you see it in person it's really confronting — like this is your body working for you outside your body, keeping you alive.
In simple terms, ECMO takes over the work of the heart and the lungs.
It siphons blood out of the child, removes carbon dioxide and oxygenates it before sending it back to the body, giving the patient's heart and lungs time to rest and recover.
Having their newborn attached to so many tubes and machines meant bonding was far from instinctual.
Picking him up and holding him in their arms was impossible.
But with help from hospital PICU staff, they were able to give him a bed bath, using wipes to wash tiny body, and change his nappy.
"We wanted to treat it — the situation — the same as we would if we had Sid at home," Lonni says.
"We weren't going to just be hands-off parents. That's not our approach.
"We wanted to feel useful in some way."
Ashleigh gets emotional as she speaks about the simple task of wiping Sidney's eyes when he could open them.
"I found that was the best," she says.
Tully, then aged 15 months, also spent time at the hospital most days to be with her brother.
Sidney was eventually taken off ECMO and doctors returned him to the operating theatre to close his chest.
"We thought the worst was over," Dr Alphonso says.
But the next day Sidney's heart stopped.
"He went into cardiac arrest in front of me," Ashleigh recalls, her voice trembling with emotion.
Sidney was reconnected to the ECMO machine to give him every chance of recovering.
But when his other organs started failing and his hands and feet went black, doctors met with Ashleigh and Lonni, who were already preparing themselves to farewell Sid.
"At this point, you have to recognise in a way you're not prolonging life, but you're prolonging death," Dr Alphonso says.
"Since death is inevitable, we usually place the baby in the parents' arms and then we stop the machine. You grow close to the family during all of these journeys.
"It does take its toll on everyone."
The hospital gave Ashleigh and Lonni time with Sidney to make memories before the ECMO machine was switched off.
"We got a couple of extra days where we just got to lay with him in a big hospital bed, and not just his own, to actually cuddle our child and make it our space as well," Lonni says.
Ashleigh wipes away tears as she recalls those last days with her son.
"They really let us do as much as we possibly could," she says.
"There were no limits. All the walls were down. It was like celebrating our son. We got really encouraged … to make memories and we definitely did."
Like Sidney, about half of the children treated with ECMO at the Queensland Children's Hospital (QCH) have severe heart disease.
Intensive care specialist Sarfaraz Rahiman, the hospital's ECMO service medical lead, says other common reasons children use the heart-lung machine include severe pneumonia and sepsis, a life-threatening response to an infection.
"ECMO has dramatically revolutionised the way we look after children with severe heart and lung failure," Dr Rahiman says.
"It's intensive care in the truest sense. It's one of the most complex and invasive treatments that we provide."
He says children can be placed on ECMO for anywhere from a few days to more than a month.
"We've had kids on ECMO for up to six weeks and some of them have done well after," he says.
Dr Rahiman is also deputy director of the QCH's PICU, a large team of more than 300 people, including doctors, nurses and allied health workers, who work together to care for the state's sickest children.
He says the unit has provided about 1.8 million hours of intensive care to more than 18,000 patients in the past 10 years.
About 1.5 per cent of those were treated with ECMO.
Maleny State High School student Byron Blackmore has no memory of his time on ECMO last year, but is grateful for the treatment that saved his life.
"Without it, I wouldn't be here," the 15-year-old says.
Byron bears a scar from neck to naval after two open-heart surgeries at the QCH last year for a genetic heart condition, known as hypertrophic obstructive cardiomyopathy, which causes the heart muscle to thicken.
Although Dr Alphonso "cut out a lot of the muscle" in January last year, Byron required more surgery in June.
He came out of the second operation critically ill and on ECMO.
His mum Jemma Mays described the situation as "terrifying".
"It was a pretty scary time for all of us," she says. "No one wants to see their child like that."
When she asked Dr Alphonso whether Byron could die, he responded "he's a very, very sick boy".
Byron was unconscious and unable to speak to his family for two weeks, but they played Broncos games on television and talked him through what was going on.
"It was so hard not being able to have him talk to us," Jemma says.
"We still spoke to him."
His grandfather also sent a video of him singing Bob Marley's Three Little Birds — which includes the line "Every Little Thing's Gonna Be Alright" — that was played to the teenager in PICU.
Byron's older brother Hayden, 21, drove to and from the South Brisbane hospital every second day from the Sunshine Coast to spend time with him.
"He would just spend hours with Byron, holding his hand, helping the nurses reposition him, just loving him," Jemma says.
Byron was weaned off ECMO and after 28 days in hospital was finally allowed home.
He spent months recovering from the effects of being on the machine.
"They said it would take about six months to recover from," Jemma says.
"And because Byron has mild cerebral palsy as well, there was a lot of flow on effects he had with that.
"He had tremors in his hands, and he's had to have a lot of physio. It's been such a big thing."
But Byron is alive and asked how he's feeling, he says "amazing".
Two weeks after Sidney Mahony's death, his family's house at Oxley, in Brisbane's south, flooded during the 2022 deluge.
"You're dealing with being in such flight or fight and shock of what's happened that when you lose your belongings, it doesn't feel like anything," Ashleigh says.
"The grieving of the house was almost non-existent because Sid died."
As they dealt with their trauma, it was Tully who helped them through their heartache.
"Tully really saved us," Ashleigh says.
"She was always the joy in the room.
"I remember at the time being like: 'I'll be able to thank you when you're older for helping me.' She's been through a lot. She's very emotionally aware and a very caring girl."
And then a year ago, Harlan was born.
Nothing can ever replace Sidney, but Harlan's entry into the world has brought some healing.
"A lot of my emotions and a lot of my grief were resolved in that moment of having to hold Harlan in my arms," Lonni says.
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