DonateLife: Ruby Payne and family share what life is like after a double lung transplant
Ruby Payne was a ‘normal, healthy little girl’ until a visit to the GP revealed a life-threatening condition that would see her needing a lifesaving double lung transplant. WATCH THE VIDEO
NSW
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Twelve-year-old Ruby Payne has been given a second chance at the childhood she almost lost, thanks to a life-changing double lung transplant.
Diagnosed with severe Pulmonary Arterial Hypertension — a rare condition that strains the heart’s ability to pump blood through the lungs — in August 2019, Ruby endured four years of hospital visits, medication trials, and numerous tests as her condition worsened.
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Her parents, Melanie Streeter and Robbie Payne, were devastated to learn their once “normal, healthy daughter” would likely need a double lung transplant to survive.
“Ruby was a normal, healthy little girl, active in netball and sports,” Mr Payne said.
“One night on the lounge, I was lying down with her before bedtime and I just felt her heart was a bit all over the place.”
Following a referral from their GP, specialists at The Children’s Hospital at Westmead diagnosed Ruby with Pulmonary Hypertension.
“We asked them what signs we could have missed and they told us common signs are lips turning blue and a pulsating vein below the ear,” Mr Payne said.
“When I looked back at some photos, we went to Fiji probably two years prior to diagnosis and you could see her lips were really blue.”
Despite ongoing oral treatments, Ruby’s health continued to decline, necessitating a central line for intravenous medications directly into her heart.
This critical step prompted Ruby and her parents to leave Newcastle, relocating to Melbourne in anticipation of the lifesaving double lung transplant.
“I was completely heartbroken to learn that the time had come,” Ms Streeter said.
“We had run out of all other treatment options. Double lung transplant was our only hope.
“Not only was Ruby about to undergo major surgery, we had to relocate to Melbourne while awaiting Ruby’s donor lungs, away from her other siblings, family and friends.
“With pediatric lung transplant only offered along the east coast in Melbourne, it added another layer of complexity emotionally and financially to an already stressful situation.”
During their time in Sydney and Melbourne, Ruby received support from unexpected places.
NRLW Jillaroos and Parramatta Eels star Kennedy Cherrington, who understands the challenges of a childhood heart condition first-hand, visited Ruby, offering support and encouragement during her treatments.
Ruby spent six weeks in the hospital and four months in Melbourne for recovery.
“The first couple of weeks were pretty daunting and frightening, and there were things that I’d never ever wish upon anybody to ever go through or to ever see,” Mr Payne said.
“She was in intensive care for a long time, then back to the ward. She didn’t wake up for the first week, and there were a couple of little complications along the way.
“But then, after the initial three to four weeks, she went back to the general ward, did a lot of physio, and started learning about her medicines.”
Post-transplant, Ruby’s life has transformed.
“Prior to Ruby’s transplant, she was spending countless days and nights in the hospital,” Ms Streeter said.
“Now she is able to attend school five days a week and enjoy a relatively normal day-to-day life.”
Ruby said: “Now that I’ve had my transplant, I’m just looking forward to having a normal day-to-day life and being able to hang out with my friends, go to school, and be with my family.
Both parents expressed profound gratitude to Ruby’s donor and their family, emphasising the importance of organ donation.
“It is absolutely not lost on our family that at a time when our donor’s family was experiencing unimaginable grief, they chose to save us from that exact pain,” Ms Streeter said.
“As a family, we are desperately encouraging people to discuss organ donation with their loved ones. It really is the gift of life.”
Mr Payne added: “I would ask everybody, if possible, to join up and sign up to be an organ donor because essentially you are saving somebody’s life.”
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