Young Lily’s heart a gift ‘you can’t buy’
Five years after becoming the youngest Kiwi to receive a new heart, Lily Leadbetter takes her antibiotics without any fuss.
She has a ‘‘small’’ cough but it could turn into something serious and her mum, Veronika Klingler, said she can never be too cautious.
The 7-year-old is used to taking medication. She has a complex regime, including daily pills, to keep her well and stop her body rejecting the heart she was given in 2016.
Lily was born with hypoplastic left heart syndrome, meaning the left side of her heart was under-developed and barely functioned.
After several surgeries, the only option to keep her alive was a transplant. Paediatric transplants weren’t being performed in New Zealand at the time, so Lily, Klingler, and Lily’s father, Adam Leadbetter, packed up their life in Wellington and flew toMelbourne.
They left their bulldog, Millie, at home with the in-laws, not knowing how long it would be before they got the call about surgery.
Matters moved quickly when they arrived, and Lily, who was a few days from turning 2, got a new heart.
She was New Zealand’s youngest heart transplant patient.
Before then, she was constantly tired. Fastforward five years, and she is like any other 7-year-old. She lovesmusic, dancing and Millie the dog. ‘‘She is a walking miracle – she beat the odds,’’ Klingler said.
But other families haven’t been as blessed, she adds. About 550 people are on transplant waiting lists and more organs are needed.
Organ donation is increasing. Last year, 73 organ donors gave 227 people life-changing heart, lung, liver, kidney and pancreas transplants.
Many more people also received tissue transplants – eye tissue, heart valves and skin – from these donors, according to the New Zealand Blood Service, which runs organ donation services.
Organ donation is only possible when a person is on a ventilator in an intensive care unit, usually with severe brain damage. Tissue donation is possible in most circumstances when people die.
Klingler implores people to donate their organs, or at least take up the conversation over the summer holidays with friends and family members.
‘‘Really, you are donating life,’’ she said. ‘‘It is a gift, and because of that gift Lily is able to go to school and reach milestones. It could be very different [for Lily].
‘‘It is the one gift you can’t buy in the shop.’’ But Lily’s journey is far from over. Her complex medical regime includes aspirin, so she bruises very easily.
Her immune system is suppressed to stop her body rejecting her heart, so she hasn’t been able to get all her vaccinations. She spent 10 days in hospital after catching chicken pox a few years ago.
The Covid-19 pandemic has been particularly tough for the family, who didn’t set foot in a supermarket during alert level 3.
And every heart transplant has an expiry date, although when that date will arrive is impossible to predict.
For now, Klingler is grateful her daughter’s health is stable.
‘‘From the moment she was born, we never knew, so I don’t really think that far ahead. Some parentsmake big plans for their children. We just want her to do what she wants to do, whatever that might be.’’