Transplant boy Max Johnson has a new heart at last - as his overjoyed parents paid tribute to ‘three miracles’ which kept him alive.
Paul and Emma Johnson and big brother Harry, 12, waited months for a donor organ to be found.
On Thursday they paid tribute to the selfless family who had donated their nine-year-old son his new heart - and the medics who made the transplant possible.
Just weeks ago their desperately ill son urged Theresa May to back the Daily Mirror’s ‘Change the Law for Life’ crusade.
It aims to introduce a new law where everyone is presumed to be an organ donor with a new ‘opt out’ law.
Now he has a new heart, and cannot believe the difference, reports our sister website ChronicleLive .
Pointing to the six-inch scar on his chest, he said: “It just feels amazing.”
His ‘old heart’ is shown on an X ray taken before the nine-hour op at Newcastle’s Freeman Hospital, a specialist transplant unit.
Enlarged by his condition - known as dilated cardiomyopathy - it looks like a white cloud beneath his ribs, so big that it has pushed his chest bone forward.
As the heart takes blood to the most important organs in the body first, such as the brain, lungs and kidneys, Max suffered poor eye sight before the life saving op.
He also had tummy problems, which have disappeared with the improved blood supply.
He must avoid crowded places for now - including school - due to risk of infection while he is on drugs to ensure his body does not reject the new organ.
But he is already on the road to recovery, with rosy cheeks, a healthy appetite, and a new fitness regime which has already seen him jogging on a running machine, and doing exercises in a hospital gym which is cleared for his personal use to reduce any risk of infection.
“I feel like there have been three miracles,” said Emma, who has spent eight months travelling from her home in Winsford, Cheshire, to be at her son’s side in Newcastle .
“There is the miracle of keeping Max alive on his heart pump before the op. Years ago, that did not exist, and he would not have been here.
“The second is the heart transplant itself, and the fact he is recovering so well, touch wood.
“The third is the family who said, ‘Yes’ to organ donation.
“This all hinges on that family having the courage to say yes to saving Max’s life.
“They faced the most difficult circumstances to do that. I will never forget it. That trinity of miracles saved Max.”
Amid the euphoria and excitement, there is also trepidation. Max must remain on drugs to protect his heart for the rest of his life.
The tablets carry a warning, explicit in its simplicity: ‘Failure to take tablets invariably results in death’.
Emma and Paul must steer their young son through the teenage years and beyond to ensure he adheres to a strict, daily regime, which currently adds up to 10 types of medication twice a day. But they also want to enjoy the simple pleasures of Max’s gift of life.
“He came into Scott House, the ‘home from home’ provided by the Sick Children’s Trust,” said Emma. “It was the first time he had been allowed off the ward without a nurse or a drip stand which he had to push around with him.
“We were hiding under the duvet and he gave me a lovely cuddle like he would at home. I keep grabbing his cheeks because they are so rosy.”
Max tells how he has never felt so well, and experts have explained that is because he probably cannot remember the time before his severe illness.
“It is the best I have felt in my whole life,” he says with a giant smile, as we are allowed special access to his private room on the children’s heart unit.
“I just love the way I feel. It takes a while for my heart to warm up, and cool down if I exercise.
“It is really weird walking around without holding something with my tubes on.
“I am looking forward to seeing my friends, and going back to school.”
He shows a video of dad getting his room ready.
It will be his first time back home since December 7, 2016, when he was taken ill and rushed to hospital in Manchester.
He is getting a bunk bed, and a new music system. And he is calling on MPs’ to back ‘Max’s Law’, the private members’ bill set up in his name.
“I hope they do bring it in,” he says, adding, with a child’s plain logic: “I don’t think people will say no.
“It is going to help save lives. Why would MPs say no?”
The Johnson family has vowed to keep backing our fight, having gone through the agony of waiting for a donor for Max.
One organ, transported in a ‘heart in a box’ device, although a match,was not viable. Then came the news they had been waiting for - in the middle of the night. “In the early hours, I rang Paul” said Emma. “Harry was at a sleep over. I waited for them to travel to the hospital to join me.
“It’s hard to describe the relief. Max waited months - then offers of two hearts within a week.”
They believe the Mirror campaign has made a difference. “The donor family may have heard our story,” added Emma. “It has done so much to raise awareness. “We will never know, but we like to think so. We know it will help others in future.”
They did not know the transplant would go ahead until Max was ‘wheeled into theatre’. Then the moment arrived. Max got a big hug from his brother, posed for a photo for his mum and dad and told them: “I love you - see you in two days!”
After seven hours of life saving surgery to get a Left Ventricular Assisted Device fitted earlier this year, Max knew exactly what to expect.
Emma joked: “He was delirious, saying some funny things on the medication. There were some choice words! But he was strong, and in a good place.
“He knew the time had come.”
Nine hours later, news came that all had gone well.
Emma said: “It was a good match. But we know there is still a long way to go.” Civil servant Paul, 44, paid tribute to the team who have saved his son’s life.
“They are amazing,” he said.
“They use a machine to keep blood pumping around his body while the op is carried out. Even the scar is tiny. They think of everything - we cannot thank them enough.”
They have delayed news of the transplant to protect the donor. Max’s surgeon Asif Hasan, the Freeman’s Director of heart and lung Transplantation, thanked his parents for making sure Max was ready.
And he appealed for more people to become donors, with Organ Donation Week due to start on Monday (Sept 4). He added: “We have several patients waiting for a heart transplant. Nearly 20 per cent of children die because of a lack of donor organs. We hope raising awareness can help change this.”
Emma will address MPs at the Labour conference this month (Sept), at the Mirror event backing the bill for a new ‘opt out’ system in England and Northern Ireland. We told yesterday (Wed) how the Republic of Ireland had now joined Wales and Scotland in introducing the opt out system, where people are assumed to be donors unless they opt out of the register, rather than being required to carry a donor card.
“The Mirror campaign helped us, and can help others in future,” said market researcher Emma, 47.
“It is so important to keep that message out there.”