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'A transplant would give a semblance of a normal life'

Oliver Flint was born with a rare condition and is in desperate need of a transplant. Here, his parents tell Susannah Butter why we need a new model for donation

Every day at 11.30am Lisa Flint's mind begins to race. "I get butterflies because it's the time the hospital told me they would call if they had found a donor for Oliver," she says. Lisa's son is nine and has a condition that means his heart doesn't pump as it should. He was put on the waiting list for a heart transplant last January and his family is still waiting to hear whether a match will become available. "As a mother you are disempowered, which is a tough place to be," says Lisa. "A transplant would give us a semblance of a normal life.

The 48-year-old, an interior designer before she had children, has just dropped Oliver and his sister Emmeline (7), at school near their home in west Hampstead. A photo of him and his youngest sister, Matilda (3), climbing a tree sits on the mantelpiece. Oliver has a blonde fringe, dark eyes and grins spiritedly. "He's determined," says his mother. "He has a strong sense of self, is competitive and a high-flier at school - he's just passed grade one piano. Harry Potter and Minecraft are current obsessions. He wants to be an architect."

Oliver played Badger in his school's production of The Wind in the Willows last week. His parents noticed the play was choreographed so that he could sit down because he is easily exhausted. "His energy is there, but his body is pulling him back - it's like he is wearing a lead jacket," says Lisa. "He's aware of how other children see him. He's too proud to go in a wheelchair, so he gets around on a microscooter. At school they give him piggy-backs up and down stairs."

Oliver was born with atrioventricular septal defect (AVSD), which means the partition meant to separate the heart into four chambers has not developed. His father Peter, 47, who works for the construction firm behind The Shard and Tate Modern, says: "He has four holes in his heart. His left side doesn't pump, his right side does the work. A healthy person has around 98% oxygenation in their blood. He's 76-78%."

His parents want to encourage people to become registered organ donors. The UK has an opt-in system where organs can only be donated from someone who had consented during their lifetime. But there is a petition to change the model to one of presumed consent, as Wales recently did and last month Scotland announced plans to do, where an individual is automatically on the register unless they request otherwise. In the UK, three people die each day because they can't find a donor, according to NHS Blood and Transplant. Some 23.4m people - 36% of the population - are on the organ register.

In Northern Ireland, around 40% of the population has signed the NHS Organ Donor Register. Even if someone has made clear their wishes to donate after their death, relatives or someone close to the deceased are always asked before an organ donation can take place. An attempt to introduce a soft opt-out system, where people are presumed to be willing to donate unless they state otherwise, was defeated at Stormont last year.

"I don't know why more people aren't on the register," says Peter. "If you have no experience of being in a situation where you need an organ, it's not something you think of. It's easy to opt in on the British Heart Foundation website."

Doctors noticed Oliver's condition at Lisa's 20-week scan. At the time they were living in Dublin, where Lisa is from. Peter is from Tasmania and they met on holiday in Greece. Four months later, Peter proposed on New Year's Eve and they were married within a year. "It was so fast. By the time the wedding came around, I was already pregnant with Oliver," says Lisa. "We came back from honeymoon in Tuscany, had bought a house, were ready to do what everybody does and then our world fell apart."

AVSD is common in babies with Down's syndrome, so that was a concern too. "Doctors mentioned termination, which isn't often raised in Ireland," says Lisa. "But that wasn't on the cards for us. I remember lying in bed, thinking, 'I don't want to have this baby because when it's inside me it's safe but when it comes out, what lies ahead of us?'"

As soon as Oliver was born he was taken into intensive care. "I said, 'It's a boy with big brown eyes', and then he was gone," continues Lisa. "You've had a child and all you want is to hold them."

Oliver was just two days old when he first had heart surgery. "Waiting while they did that first surgery felt like an eternity," says Lisa. "Most new mothers worry about whether their babies are eating or sleeping, but I was worried about dressing my baby's wounds."

At seven months, "looking bonnie", Oliver had another operation. Lisa says: "Four hours in, the surgeon came out crying. He asked us to sign a consent form because they couldn't fix him. That was nearly worse than the original news about him having the heart condition. We thought he might die that day. The surgeon was crying because he knew at that point our lives had changed for ever."

The lowest point came two months later when Oliver's heart was barely beating. Doctors told them to go to London, which shares a transplant list with southern Ireland. "He was too poorly to go on a plane so we went on an army helicopter to Hendon and got an ambulance to Great Ormond Street," Lisa says. For two weeks they stayed at a hotel, waiting to hear if a donor was available. They never went back to their Dublin house and bought their current home to be near the hospital in case a transplant came up.

"You have to be as healthy as possible to have the transplant," says Lisa. "I barely took him out of the house because I was so afraid of infection. I wouldn't go on public transport, I couldn't join mother-and-baby groups or meet other mums. I was in an isolated bubble with my son on a transplant list, in a city where I only knew a smattering of people."

Eventually, Oliver was well enough to come off the list, but when he started primary school a blockage formed and he needed open-heart surgery. He was six. That was when doctors advised telling him about his condition. "He said, 'I thought there was something wrong with me because I can't run in the playground with the other children... I get out of puff'. He was innocent enough then that he didn't realise it is life or death.

"It's common for children with conditions to know they are unwell but not want to say anything for fear of it causing their parents anguish. I was devastated when the nurse told me that."

Lisa remembers taking him back to school. "All his little friends put their arms around him. I couldn't look, I was crying so much. He pulled up his T-shirt and showed them the scar on his chest."

They chose Oliver's school, Trevor-Roberts, because it's not too focused on sport, which Oliver doesn't have the stamina for. Still, he's frustrated. Lisa says: "I saw the whole class get up to play tag recently. Oliver couldn't so he hunkered down under a tree."

He knows he's on a transplant waiting list. "He asked if that means he gets a fresh heart. Then immediately he said, 'That means somebody else has to die'. We told him they were dying anyway, not for him, and he went off to play."

The Flints have "exhausted all their options". They even thought of moving to the US because there are more donors there. "It felt like we were being proactive," says Peter. "The bills were huge, $1.5m (£1.16m) for something that's free here. We were going to remortgage the house. Oliver told his friends he was going to America for surgery. But 95% of their organs go to US citizens - it would've been risky."

Brexit worried them because the UK shares a register with Europe, but the Flints have been told this won't change. While they wait for news, they've stopped planning ahead and focus on time together. Oliver's "favourite spot" is the restaurant Feng Shung Princess, on a boat on the Regent's Canal.

His sisters are "protective", says Lisa. "Emmeline won't do gymnastics because Oliver would prefer to stay home - she wants to be close to him.

Having more children "saved our family", says Lisa. "When Emmeline came I had to look after her so I couldn't obsess about Oliver."

Lisa has told Oliver "don't wait to live your life". "I want him to experience everything - love, family - because life is short. But there's no such thing in Oliver's book as him not making it. Anybody could be in a situation where they need an organ. It doesn't matter if you are nine or 90, giving life to somebody is one of the most incredible things you can do."

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