Gifted Lives exhibition
Gifted Lives celebrates the stories of Queensland families whose lives have been touched by organ donation, whether as recipients or donors. The moving and heartfelt exhibition captures the profound human connections which occur around organ donation, and encourages viewers to reflect on the importance of registering as potential donors.
The photographs were taken by talented young Brisbane artist, Louis Lim, who is deeply moved by the diversity of human connections and experiences. Louis specialises in photography of people and situations which are often unseen in the media.
He visited each family who participated in this project, listened to their stories and had the great privilege of being invited into their lives. Louis’s beautiful images that resulted (portrait and still-life) speak to the trust he developed with his subjects—a trust which allowed for true collaboration. The photographs are intimate, revealing, joyful, intriguing and occasionally very sad. They reflect the many ways in which organ donation impacts individuals, families, communities and professional caregivers.
Gifted Lives is a joint initiative of Donate Life Queensland and Children’s Health Queensland’s Arts in Health Program.
Slowly but surely, Davina and her family started an extraordinary journey that would lead to her receiving a new heart. Davina was initially diagnosed with viral bronchiolitis and her parents were told she might be a lifetime asthmatic. She was put on Ventolin to help her breathing.
At eight months of age, D’s health rapidly declined with her parents seeking help at the Gold Coast University Hospital. What began as a routine admission would quickly escalate to a nerve-wracking ambulance trip to the Queensland Children’s Hospital. D spent two weeks in a coma and a total of five weeks in ICU; she only left ICU when a CareFlight was arranged to take her to the Royal Children’s Hospital in Melbourne for a heart review.
In Melbourne, doctors conducted a range of tests, and D continued to crash whenever her support drugs were reduced. It became obvious that she wouldn’t be leaving the city without a new heart.
After 11 weeks and four days on a life-supporting ventricular assist device and with doctors fearing her little body could no longer cope, D received an amazing gift of life – a heart transplant. Now, D is a happy, healthy two- year old, getting ready for her first day at day care and loving life with her parents and three doting older sisters.
For now, thanks to medications and tube feeding, Elise is stable and doing well while she waits. Her tummy is swollen and she has pressure on her heart and lungs from restricted blood flow as her liver tries to function as best it can. Elise’s mum, Anthea, said she’s a very determined, loving little girl, who stands up to her older brother and runs around like a happy toddler. Anthea said while the family is on alert for the upcoming surgery, they are concentrating on keeping Elise healthy. They are very grateful for the medical system that constantly gives them hope of a bright future for their daughter.
Kiana spent four long years on dialysis, until doctors decided it was time to step it up and prepare for a transplant. Kiana’s mum Monique said that as scary as it was, after speaking with Kiana’s doctors, it was decided that a living donor transplant offered the best chance of a normal life for Kiana. It was daunting for the family, knowing that Kiana probably has three to four transplants ahead in her lifetime.
The family got together and Kiana’s Ninny, her paternal grandmother, stepped forward as her first donor. Monique said they were amazed at Kiana’s quick recovery; she was up and walking two days after her surgery, back home after six days and she has never looked back. On June 2 the family celebrated her first ‘kidneyversary’. She is now enjoying doing all the things that weren’t possible before her transplant; swimming in pools, sitting in a full bath, going to sleepovers, going camping and family holidays. “Kiana has always been a happy little girl regardless of what has happened to her, but I would say that she is definitely seeing life and living in a new light and embracing it with every moment she can,” Monique said.
Kane, 39, Kye, 15 and Kaedyn, 16
They’re the three K’s with three new hearts – Kane, Kaedyn and Kye have quite the story to tell. At age 15 in 1993, Kane became ill with chronic heart failure. He needed a heart transplant. At the time it was believed his heart failure had been caused by a virus.
Eventually Kane met Kirsty and they had two boys, Kaedyn and Kye. While getting them tested to make sure their dad’s condition wasn’t hereditary, the unthinkable happened. Kye, then aged 6, contracted pneumonia and was found to have an enlarged heart. He was diagnosed with familial dilated cardiomyopathy and flown to the Royal Children’s Hospital in Melbourne, where the wait for a new heart began. Kirsty said the news of Kye’s illness literally took her breath away. But when Kaedyn was also diagnosed, they were ready for the fight and the journey that lay ahead.
Kirsty clearly remembers the day she heard Kye was to receive a transplant. She was just about to have a shower at Ronald MacDonald House when she got a knock on the door. “It was the first time I really cried out of pure happiness.” All was well until 2015, when at age 14.
Kaedyn’s heart started to fail. Emergency surgery saw him fitted with a BIVAD (double ventricular assist device) and the waiting for a new heart began. In 2016 Kaedyn got the call and after a marathon surgery, and a small hiccup when he developed compartment syndrome in his right leg, he was back out on the footy field in no time. The boys are now typical teenagers who share something special: every year they celebrate the anniversaries of their transplants and the lives of the donors who saved theirs. Kirsty says “Words will never be enough to express our gratitude. But we promise them all in prayer that we will look after their loved ones’ hearts the best we can.
“While it was scary and upsetting to think about, it was also a relief that she may get better and have a better quality of life.” Holly said they were lucky and extremely blessed that Lara was only listed for one month. “I was at work when I got the call. It was a massive shock, she hadn’t been listed that long. While on the phone to our coordinator I experienced every single emotion you could think of, I was sad, but happy, scared but excited. Then I struggled with the emotion of knowing what this meant for another family as well,” she said.
Lara got through the 10-hour operation with flying colours and is doing well. Holly said she is incredibly grateful to the donor family. “Their generosity has given Lara and our family a new life and we will never be able to thank them enough.”
However soon things got much worse. The rash blistered, so a biopsy was taken; it came back negative, and the mystery continued. Days later Max became jaundiced and his skin started peeling. A biopsy of his liver finally gave the family their answer: Max was indeed a medical mystery; he was suffering from a very rare condition: ‘vanishing bile duct syndrome’. This syndrome is usually associated with overuse of medications, but Max wasn’t taking medications, in fact he hadn’t been sick for years! Now his situation was dire and he was quickly put on the liver transplant list, with his gift of life coming around five months after his medical journey had begun.
The call happened when the family were at a barbecue. Max was keen to head off right there and then to get his new liver and new lease on life. Transplant day wasn’t without its drama, but after an initial setback with a kink in one of his bile ducts, and then the need for regular stents, things are finally on the up for Max.
He’s had his last stent removed and is now nurturing a passion for cricket. While he still loves his NRL, Max has decided it’s safer for his new liver that he watches from the sidelines as the ‘ball boy’ and keeps his gift of life safe.
Ollie (Olive), 3
Her mother Mandy had already lost her dad to this condition when she was just a teenager, while he was on the transplant list.
CareFlight transferred Ollie to The Royal Children’s Hospital in Melbourne where she was placed on the transplant list. As her condition deteriorated, she needed the assistance of an artificial heart (left ventricular assist device). Every day she had a 30 per cent chance of dying and every day she underwent procedures and tests in a bid to save her life. But Ollie’s miracle was just around the corner. Her dad Cory got the news a heart had been found.
At the time Ollie was one of only five children in Australia to receive an ABO incompatible heart transplant. Her immune system was undeveloped enough to cope with a heart that wasn’t compatible. While other health challenges have popped up for Olive, her heart is beating strong and she loves being able to go to the beach or park with her brothers and friends.
Saanvi was the long-awaited first child of Julie and Vijay. She arrived healthy and well about four years after they migrated to Australia from India. Problems arose around two-and-a-half months later, when Saanvi suddenly developed jaundice and the first of many painful tests and procedures began. Saanvi’s condition continued to deteriorate until she was wait-listed for a liver transplant at just five-and-a-half months. The family was distraught. Medical advice was that Saanvi had about six weeks to live without a transplant. After 25 agonisingly long days on the transplant list Saanvi received her life-saving gift, while simultaneously having that ‘monster’ removed from her tummy.
Doctors are still unsure of the cause of Saanvi’s liver failure, but thankfully she’s experienced an uncomplicated recovery. The family remains eternally grateful to the donor who saved their daughter’s life and for living in a country where organ and tissue donation enjoys strong community support. Sadly, this was not the case for a close relative in India. Julie’s brother-in-law died while waiting on the organ donor list in India for a liver early this year.
Not everything in life goes exactly to plan and while the liver fixed Saki’s liver failure she unfortunately had two strokes, which has affected the use of her arms and legs. With quite a creative flair, Saki is now living a full and fun life having finished school and now working three days per week at Monte Lupo, an arts- based organisation for people with disabilities. She describes herself as an artist, animal lover and fashionista. Living with her mother, sister and her brother-in-law with a much-loved cat and dog, Saki loves to cook, bake and socialise.
Sean hadn’t been well from age seven, but the course of his illness had been baffling. The family wasn’t even aware he was eligible for a lung transplant until that desperate afternoon when he was medically evacuated out of Brisbane and wheeled into surgery at 9:30pm that night at the Royal Prince Alfred Hospital in Sydney. By 6:15am the next morning, the family were relieved to hear the operation had been successful, although great caution remained until he regained consciousness 10 days later. His mum readily admits believing Sean would become a donor, rather than a recipient.
Looking at him now, it is hard to believe this story even relates to him. He’s doing all the normal things 10 year olds should, riding his scooter around the neighbourhood and playing Minecraft with friends. But Sean’s journey has matured him in ways other children his age couldn’t possibly understand. They speak often about how close they came to losing him and how their donor and family’s decision will always be a part of his life story. In his future, all things are bright and shiny. He dreams of growing into a rich and famous YouTube sensation who plays Minecraft all day as his career.
Sophie, 10 when she grew her angel wings
While the family was well versed in CPR and managed to keep Sophie alive until they reached the hospital, sadly Sophie passed away. At a time when the family were experiencing unbelievable grief, they managed to look through their pain and see the amazing gift of life that Sophie could give to others, so their families wouldn’t experience the same devastating loss.
“When we were asked if Sophie would become an organ and tissue donor, it took just 30 seconds for us to decide,” said Karina. “Of course we would. Sophie always wanted to help people.”
The family loves to remember Sophie’s beautiful spirit and caring nature. And like most little girls, she had a special adoration for unicorns and rainbows. The Bombskis take great comfort in knowing their decision helped other people, including other children, live on to see many more beautiful rainbows. Their selfless act saw both of Sophie’s kidneys, her liver, lungs and heart valves become the ultimate gifts for their recipients. The family hope that by telling their story it will encourage more people to discuss and register their donation decisions before it’s too late.
“I’m not much of a public speaker, but I do it because it’s something I’m really passionate about,” Karina said.