The 6-year-old – who loves Lightning McQueen and riding his electric bike – is now recovering from a heart transplant giving him a new lease on life.
When the Hamilton boy was born, he was diagnosed with a heart muscle disease known as dilated cardiomyopathy, and Barth syndrome, a rare condition characterised by an enlarged and weakened heart.
It meant Chase had low energy as his heart had trouble pumping blood and could stop at any time.
The chances of a heart transplant were slim and for years he was left on an indefinite waiting list.
This year, his condition worsened, and for the past few months, Chase has been relying on a mechanical heart to survive.
But recently, Chase received the gift of life from a donor with a huge heart.
“It’s been brutal, not knowing if Chase would survive long enough to get a heart and there was no guarantee of an exact match,” said Kelsi Porter.
“After surgery, I touched his hand, it was warm, and he looked pink. His heart was beating as strong as a Ferrari.”
It’s been a long road for the boy known as “Chaseman,” or “Mr Blue eyes”.
When Chase was 3, he was too small to have a transplant in New Zealand and the Ministry of Health declined his application to have surgery in Australia, saying it was too costly.
Dr Joanne Ritchie, clinical lead at Organ Donation New Zealand, said of the 16 hearts donated in 2022, there were no paediatric hearts.
“Approximately 1 per cent of New Zealanders who die each year are in a situation where organ donation may be possible and only a small percentage of these are children (16 years and under) and not all are suitable for heart donation.”
The family had to wait it out , hoping Chase would grow big enough for an adult donor.
But in August, Chase caught Covid-19, then a virus, which left him breathless and unresponsive.
He was airlifted to Starship children’s hospital in Auckland and hooked up to a machine outside his body, called a Berlin heart. Chase nearly died multiple times waiting for an organ donor.
“It was touch and go for 7 weeks in PICU. I didn’t trust Chase would make it through the day, that was a brutal realisation,” said Porter.
“The Berlin heart was a temporary measure, but the recovery was complex and there were complications: high blood pressure, infections and too much fluid which caused damage and added extra pressure to the right side of his heart.
“At one point he could only drink 300ml of water a day, but he was so thirsty, that was hard to stomach. We frequently got calls in the middle of the night saying Chase isn’t doing well, which freaked me out.”
The couple, with their youngest son Jasper, 1, uprooted their lives from Hamilton to be with Chase while he was at Starship. They resigned from their jobs, rehoused their pets and rented out their home.
“Chase had 30 per cent less heart function but stuck in there and grew big enough to be listed. Generally, we don’t get paediatric organs in New Zealand, so it needed to be a small adult donor who weighs under 60kg, which is tricky,” Porter said.
They finally received a call to say a donor heart was available.
Chase had to be sedated for nearly a week, but when he woke up from heart transplant surgery, the first thing he said was, “Mummy, I’m hungry”.
“This heart is the best Christmas present ever, it’s the gift that will keep on giving,” said Porter.
“It’s taken six years to get here, but they worked night and day to make this happen,” Porter said of the “genuinely caring” medical and surgical team at Starship.
“We were told Chase was going to die when he was born but he kept on going and growing till he got Covid. He is recovering steadily, but his heart is a bit big which increases his blood pressure. To be honest, Chase wasn’t doing well with the Berlin heart, so they had to take the first offer that matched.”
Now the couple want to encourage other families to consider organ donation.
“We are thankful to the donor who saved Chase’s life. We are organ donors, you can’t save anyone’s life if you’re not. Let your family know what your wishes are,” Porter said.
Ritchie said Organ Donation NZ educates and supports specialist nurses and doctors working in intensive care across the country “to have donation conversations with whānau where their child may be able to donate organs or tissues after death”.
The Porters also wanted to thank Heart Kids, a charity that provides support for children and their families around New Zealand.
“They have been a massive support throughout our journey and have stayed in contact. They raised money for a blood monitor for Chase.”
Porter said their lives were still on hold while Chase recovers and they had reopened their Givealittle page to help with living expenses.
While incredibly relieved to have a new heart for Chase, Porter also had survivor’s guilt thinking about other children yet to find a compatible donor.
“I am relieved, but it comes with grief knowing someone else lost their life. All we can do is fulfil the donor’s wish and give this heart the best life. I will love and nurture this heart as much as I do Chase.”
For more information, visit www.heartkids.org.nz
