Despite being 10 years old, Louis Hanley has never known what it feels like to have a properly-working heart.
But on Friday the Bo’ness youngster emerged from nine hours in the operating theatre having had a successful transplant.
I want to educate children so that they can tell their parents it is okay to give the gift of life to others in case the worst possible ever happens to themNadege Hanley
The operation is a major milestone in his long and difficult journey living with congenital heart disease, a journey that started with open heart surgery when he was just five days old.
For Louis’s family, including mum Nadege, dad Alastair and big brother and St Mungo’s High pupil Nathan, it’s an emotional time.
Nadege said: “It’s been tough and Louis was very, very scared. Now the surgery is over it’s difficult to know what he’s feeling because he’s never had a proper working heart before. But the other day he told me he felt like the Hulk.
“It’s very early days, but we are being told the transplant was a success.”
Louis’s condition was first detected before he was even born. Hypoplastic left heart syndrome appeared during Nadege’s 20-week scan.
She said: “We were told it was one of the most complex cardiac conditions, and that there was only palliative treatment but it wasn’t repairable. He was born in Stirling Royal Infirmary and, when he was hours old, the diagnosis was confirmed and we were told only half of his heart was working.
“He was transferred to Yorkhill and we were given options - have surgery or let nature take its course. It was horrible, I had just had a C-section but had also gone through labour. I was exhausted, drained and shocked.
“It wasn’t a straightforward decision, but he was transferred to Birmingham for surgery.
“Louis was operated on again at seven months old, but around his first birthday, he suffered a fluid build-up. We were told his heart was not functioning well.
“At three, he was accessed for a transplant, but we were told there was no point listing him because he would never get to the top of the list because although he was unwell, he was well enough.
“We made life as normal as possible for him. It’s been an invisible disability, but physically he has been restricted. He was in the Beavers but had to leave because he couldn’t keep up with all the games, he couldn’t cope and he’d get too tired.
“Generally, he was fine up until two years ago but then he began to struggle and he’d suffer from infections in winter.”
Louis was placed on the routine transplant waiting list last year, but in October he was put on the emergency list after his heart failure became more severe.
“A heart transplant became his only option,” said Nadege. “The past few weeks have been very difficult. Most of the time he’s chirpy, he chats away, he’s a normal 10-year-old, but he’s also very sensitive - he puts on a front, but then he’ll crumble.”
Last Thursday morning, Louis, dressed in a Pudsey onesie, was flown by ambulance plane to the Freeman Hospital in Newcastle after a heart became available.
Later that day, the transplant was carried out and continued into the early hours of Friday. Louis is now recovering in an isolation unit.
As news of Louis’s transplant spread, the thoughts of everyone at his school are with him.
Stephen McPeake, acting head teacher of St Mary’s Primary in Bo’ness said: “Since Louis started school we have been aware of his heart condition and we have always known that one day he would need to get a transplant.
“We are delighted to hear that it has gone well. Louis has many friends at school, and all pupils and staff wish him the very best. We are looking forward to seeing him back at school very soon.”
Over 4340 Scots are living with a transplant, thanks to organ donors and their families.
In 2016/17 there were 133 deceased organ donors in Scottish hospitals - up from 99 the previous year.
In the same year, 430 people in Scotland received an organ transplant - 348 of these were using organs from deceased donors, with an extra 82 kidneys provided by living donors.
However, one person still dies every day in the UK while waiting on a transplant.
In Scotland, 584 people are waiting for an organ transplant.
Currently, 45 per cent of the Scottish population is on the NHS Organ Donor Register. In Forth Valley area, it’s 43.5 per cent.
But continuing to increase registrations is vital, as less than one per cent of deaths in Scotland happen in circumstances where the person is actually able to donate their organs.
People are being encouraged to share their organ donation decision, so relatives can honour their wishes.
Louis Hanley’s mum Nadege said: “People need to speak about organ donation. We need to show people how it works. Where the organs come from? Who’s involved? We have to open it up, making it OK to talk about.
“I want to educate children so that they can tell their parents it is okay to give the gift of life to others in case the worst possible ever happens to them.”
Visit organdonationscotland.org to find out more about organ donation.