At the tender age of four, Auckland preschooler Taylor Barnes lay in hospital in heart failure. The blue-eyed cherub was being kept alive by an artificial heart machine pumping blood around her tiny body.
But on the evening of her fifth birthday in August, the little girl got the best present she could have wished for.
“We had just finished our dinner in the ward at Starship children’s hospital and Taylor was watching The Princess Bride when a doctor came in and said, ‘We have a beautiful healthy heart for Taylor,’” remembers her mum Leanne, 39.
Little Taylor was about to make history by becoming the 285th person in New Zealand to receive a donor heart – and the youngest ever to do so. Her dad Mathew, 39, had left hospital and was at home getting Taylor’s two-year-old brother Jesse to bed when Leanne called.
“We were thrilled, but it was a shock,” he tells. “Taylor had only been on the transplant list for 71 days. It all happened really quickly.” Three weeks earlier, Taylor had two open-heart surgeries. The first was to connect her to the Berlin heart device, an air-driven pump that takes over the work of the organ when it’s too weak to pump blood around the body. It has only been used on children a handful of times here.
The second surgery was to clean up the clots around Taylor’s heart. When the transplant news came through, Mathew rushed back to Starship and the couple explained to their precious daughter what she was about to go through. “We said the time had come to get rid of her robot heart and to get a new, healthy one,” recalls Mathew, a school property manager.
And just hours later, Taylor was prepped for surgery. “I wheeled her into the theatre,” Mathew tells. “I said, ‘You are going to wake up with a new heart and Daddy will be holding your hand.’”
Taylor’s new-found energy means that little brother Jesse may not be able to outrun her any more!
Early danger
Taylor was only nine days old when she was diagnosed with a rare condition, left ventricular noncompaction cardiomyopathy. It affects the muscle structure on one side of her heart, limiting its ability to pump out blood to the rest of her body.
Leanne and Mathew knew a heart transplant in the future would be Taylor’s only option.
For the worried parents, it was to become a waiting game – in NZ, transplants aren’t available for children under the age of one.
“We just took her home and got on with it,” says stay-at-home mum Leanne. Once Taylor was on heart medication, she thrived, meeting the usual early childhood milestones and eventually going to a Playcentre three or four times a week. But by the time she was three and a half, things went downhill.
Admitted to Starship with pneumonia three times, a routine heart check detected Taylor had a second condition, leaky valves. “There were nights where I lay next to her in bed
and counted her breaths per minute,” recalls Leanne.
By May this year, Taylor was admitted to Starship and put on inotropes, powerful drugs to alter her heart’s contractions.
By July, she was connected to the Berlin heart device. “We wanted to keep her alive long enough in the hope that a new heart would become available,” explains Leanne.
Finally in August, Leanne and Mathew sat waiting for eight nail-biting hours while their darling daughter had her transplant at Starship.
Taylor after her open-heart surgery to connect her to the Berlin heart device.
Miracle recovery
The surgery was led by Dr Kirsten Finucane, who featured in Woman’s Day in September.
For nearly two decades, Kirsten has been the director of surgery, paediatric and congenital cardiac service in Auckland, leading a dedicated team that operates on the country’s smallest and sickest hearts.
“As soon as we met Kirsten, we knew Taylor was in the best hands,” says Leanne. And amazingly, just two days after her transplant, little Taylor was sitting up in bed. “Suddenly, the last few years felt like a bad dream,” Leanne says with relief.
The Barnes family says it’s early days, but already Taylor is a different girl. She’s gone from being shy and often tired, to a confident and outgoing five-year-old. Taylor is having physiotherapy three times a week and will be on anti-rejection medication for the rest of her life.
“The risk is high for the first year, so we do need to take it slowly, but we see improvements every day,” says Leanne. “The aim now is to get Taylor to school by the end of the year.” Mathew used to have to carry his wee girl up the stairs, but now she’s walking around on her own and is even jumping.
Although Taylor is young, she understands much of what she’s been through. She knows her new heart came from someone not as lucky as her. “We told her a boy or girl had an accident and unfortunately they didn’t make it. We have told her she is lucky and we are thankful because it saved her life,” says Leanne.
A lovely surprise after Taylor’s surgery is the discovery that some of the valves from her old heart could be donated to another child. “That was the best news ever,” says Leanne. “Now we can pay it forward and use Taylor’s old heart to help save another child’s life.”
Mathew and Leanne are now looking forward to the future, and hope donating Taylor’s heart valves will give another family the same hope.
