By KATH GANNAWAY
A WARBURTON dad has told of his family’s rollercoaster between heaven and hell as a rare infection threatened his 12-year-old daughter’s life, and her limbs.
Just over a week after contracting a bout of flu on 10 October, Ayla Tsoumbakos, found herself in Monash Children’s Hospital (MCH), diagnosed with necrotising myositis.
The past three weeks, as the family – dad Paul, mum Rachel, 14-year-old brother Aidan, and Ayla – have come to terms with the flesh-destroying disease, they have been overwhelmed by a 21st-century mix of world-class medical response, prayer, Facebook, community support, McDonalds and Ayla’s own courage and resilience.
The disease is rare in young people and with hard to diagnose as it can mimic several other conditions.
Sitting by his daughter’s bedside at Monash Children’s Hospital on Friday, Paul told the Mail of the shock of Ayla’s sudden deterioration from a bout of flu to the shut-down of her internal organs, an induced coma and the very real threat of amputation of her lower legs.
Aidan was recovering from flu when Ayla came down with similar symptoms leading them and their local doctor to believe it was also flu.
When it turned to excruciating stomach pain on 19 October, Paul and Rachel headed straight for hospital.
“She couldn’t walk, couldn’t use her arms,” Paul said.
“I scooped her up and she was ice cold.”
It was a horror trip with Ayla struggling to breathe and three ambulances meeting them at Woori Yallock and working for nearly half an hour by the side of the road to stabilise her for the dash to the closest hospital, Maroondah.
“Maroondah were great, but realised very quickly it was not something they could handle,” Paul said.
She was taken to MCH where a team diagnosed necrotising myositis.
“Her lungs failed, her kidney failed, her heart failed and her liver also gave up for a bit. She was pretty much on machines just to keep her alive and put into an induced coma.
“It was hectic and horrific.
“It was absolutely heartbreaking to see our daughter in that condition.”
The medical team were baffled as to what had caused the migration from a ‘flu-type’ condition to a disease which rarely effects people under 40, and is even less common if it is not attached to an injury.
Paul and Rachel could never have anticipated the next question – “Can we unzip your daughter … so the skin doesn’t burst.”
“We were made aware that expansion of the body is the first thing that kills people and in Ayla’s case if was complicated because all four limbs, arms and legs, were affected,” Paul said.
“We knew instantly we had to put it in their hands,” he added.
Nonetheless, it was a painful permission.
A complication of the procedure was a massive release of potassium into Ayla’s body and the family told to brace for the worst.
“We were being told Ayla may not pull through because of the potassium.
“As a dad I just put pleas out there on Facebook … this is what we’re going through …”
The response was as unexpected as it was overwhelming and heartwarming.
Paul said people from 11 countries opened their hearts, and their churches to pray for Ayla.
“Some were prayer circles, with people continuously praying for hours and days,” Paul said.
“From the moment we put it out on Facebook that it was touch and go, the prayers started.
“We came in the next morning expecting the worse but were told her system had flushed itself of the potassium.
Paul said from that moment on Ayla began to stabilise and was brought out of the coma.
She now faced extensive surgery, and Paul and Rachel were told that very likely meant amputation of multiple limbs.
The surgery was postponed when one of the nursing team looking after Ayla noticed that 26 October was her 12th birthday.
“She just said you can’t schedule such life-changing surgery on such a significant day, and asked for a postponement,” Paul said.
Paul and Rachel were given another insight into the compassion of the Monash medical team when they were told that as parents, they would not have to tell Ayla of the possible outcome of the surgery.
“The team of surgeons sat around her bedside, it was her 12th birthday, the day before the surgery was scheduled, and said we need to let you know that you may lose your legs.
“For Ayla, it was a relief at that time.
“Her response was the most humbling thing for us all … she thanked us and said ‘I just wanted to know’.”
If it was to be a wheelchair, Ayla said she wanted a fast one.
Further down the track, if it was prosthetics, she said she hoped they came in rainbow colours … and with sparkles.
Ayla’s courage stunned not only her family and friends, but the 13-strong medical team who were working with her.
With surgery imminent Paul said he kept in touch with daily Facebook posts and said that the family were amazed and strengthened by the positive messages and prayers.
There is no doubt the thought of Ayla losing her legs was devastating, but he said they tried to focus on their blessings as she was wheeled into surgery.
“At least we had our child alive,” he said.
The post-operation meeting with the surgical team was worded very carefully, but Paul said they were left in no doubt that Ayla’s outcome was exceptional.
She had come through the four hour operation with all limbs intact.
The medical team believed she had enough muscle remaining after the operation to remove the necritised flesh to perhaps support her own weight and use her own legs again
“We were told it was quite amazing, that it has never happened with a child so young and with multiple limbs so severely impacted.
“She has amazed all the teams involved,” Paul said.
Ayla’s rate of recovery continues to amaze.
Paul said she can now lift her legs up off the bed, and her hands, and can type on a keyboard.
The experience, grim as it has been, has had so many positives for him personally and for the family.
Although not a religious person, he says he has found it hard not to say a word of thanks for all the prayers as he passes the hospital chapel.
The family moved out from the city two years ago to Warburton to get away from fast food and to make a better life for their children in the country – and admits to a few negative thoughts about McDonalds in the past.
But, he has nothing but praise for the role Ronald McDonald House plays in providing accommodation for families when they need it most.
“We’re so grateful to Ronald McDonald House,” he says. “Without them we would have had to travel every day back to Warburton.”
He is in awe of the support the Warburton community has given the family, including Warburton Primary School where Ayla is a school captain.
“The whole community has been so beautiful, coming to our house to mow the lawns, fix the chicken coop and do the gardens.
“A driving force for Ayla’s recovery is the people of Warburton.
“We can’t thank them enough.”
He says Rachel has been his ‘rock’ throughout their shared ordeal, but it is when he talks about Aidan that his voice breaks.
“He has matured instantly,” he says, struggling to contain his emotion.
“He stands as tall as I do; I stand next to my son and look at him as a best friend.
“We are so proud of him.”
The Tsoumbakos family say they are indebted to Monash Children’s Hospital for their daughter’s life and the amazing knowledge, skill and caring that is continuing to see them through a life-changing chapter in their lives.
“Without them we wouldn’t have our daughter and sister,” said Paul, who wants to thank the team by raising funds that will help them help other children.
To donate go to www.monashchildrenshospital.org
