For 976 days Kiara Lloyd waited for the gift of life.
It’s an unfortunate record to hold, but Kiara has waited longer than any other child for a new heart.
Born healthy, Kiara suffered pneumonia a number of times as a toddler. When she was just two and a half years old, she had a trip to the doctors to treat a nasty stomach bug.
“We were told her liver was enlarged and from that tests were carried out that showed she had a heart condition. We knew she was sick, but the diagnosis was horrific,” Kiara’s mum, Nicole, says.
Kiara had a rare and life-threatening heart condition called restrictive cardiomyopathy, and her parents were told unless she had a transplant, their little girl would be dead by the time she was six.
So began the waiting game.
The Royal Childrens Hospital Melbourne is Australia’s only paediatric heart transplant facility, and has performed 116 life saving transplants since its inception in 1988.
Living in Sydney meant Kiara and her family had to stay within an hour of the airport, so they could leave at a moment’s notice for the lifesaving operation.
“Kiara was placed on twice-daily medication, and while that kept her from hospitalisation, she didn’t grow at a normal rate,” Nicole says.
For more than two and a half years, Nicole and her husband Craig would live in limbo, not knowing if their daughter would survive.
Cognitively Kiara was perfect: she loved arts and craft and devoured books. But she had no energy to run or play with kids her age.
“Until her transplant, she used a pram as she was small and weak,” Nicole says.
“We took her to ballet class, but she would sit on the side for much of the class, too tired to participate.”
The one day in late 2008, Nicole received the call she was so desperately waiting for.
“I was having a coffee with my sister and I was told a suitable heart had been found. Within 40 minutes Kiara and I were headed on a plane for Melbourne,” Nicole says.
Surgery began soon after they arrived at hospital, and seven hours after it started, the complex surgery finished and 5 year old Kiara’s new life began.
“She was kept in an induced coma for 4 days, and then in hospital for a further 3 months while she was rehabilitated,” Nicole says.
“The first thing I noticed about her was her colour. For years she had a blueish tinge, and suddenly she had perfect olive skin again.
“During rehab Kiara built up her leg muscles again, and she learnt to run and ride a bike for the first time.”
Kiara’s story is truly miraculous, and could have ended very differently had a suitable donor not been found.
Dr Robert Weintraub, the senior cardiologist at the Royal Childrens’ Hospital Melbourne, says Australia’s organ donation rates rate poorly internationally.
“Our donation rates are significantly below those comparable countries in Europe and North America,” he says.
“Without the courage and generosity of organ donors and their families, none of these donations would be possible.”
Today, Kiara is a slightly small, but completely healthy 11-year-old girl.
She takes medication three times a day and will for life, but otherwise can do anything a normal pre-teen would do.
“She practices ballet for 5 hours a week, and has recently taken up touch football,” Nicole says with happy disbelief.
“I am acutely aware another child died for Kiara,” she adds.
“But it was their family’s amazing act in a time of crisis that helped our daughter live.”
To be considered for organ donation you must register first, and inform your family of your wishes. To find out more, visit www.donatelife.gov.au
Related stories
Native ad body.
Native ad body.
Native ad body.
