Every morning I would close my eyes and say to myself: please, another day
ORGAN DONATION CLOSE TO SURVIVOR MAX’S HEART
TRANSPLANT survivor Max Johnson has told of his despair as he waited for his new heart – and how he once “yanked” out a wire attached to the machine keeping him alive.
The nine-year-old was desperately ill for months with cardiomyopathy, which enlarged his heart, and kept alive by a Left Ventricular Assisted Device (LVAD).
He was on the organ transplant list for seven months at Newcastle’s Freeman Hospital before a donor for him was finally found in August.
His nine-hour transplant operation was filmed for a BBC documentary to mark the 50th anniversary of the first heart transplant in December.
Max spoke at length about his experience waiting for a donor – and why he felt it was so important to support our sister title the Mirror’s Change the Law for life campaign.
He said: “Literally every morning I would close my eyes and I would say to myself: another day, please, another day.’”
His mum Emma joked with him: “You did not tell me that.”
And Max replied: “There are a load of things I have not told you. At one point I gave up and yanked the heart wire out [connected to the machine keeping him alive]. The next day you could tell because it was bleeding and woozy.
“I just thought, ‘this is getting stupid, there has not been one single offer of a heart for me.’ And then one week later I got the transplant.”
Speaking of the importance of organ donation, he said: “I wanted to save people’s lives because I knew what it was like. “It was horrible.” Both market researcher Emma, 47, and his dad Paul, 44, a civil servant, from Winsford, Cheshire, told of their gratitude to the donor family who saved their son’s life.
“We just hope that we can help raise awareness and save lives for people who are languishing on the waiting list and getting sicker,” said Emma.
And both parents fought back tears as she said: “We think of them every day. What they have done is amazing. I feel incredibly lucky that we have our little boy.
“We are so blessed someone had the courage and humanity at what I don’t doubt must have been the hardest
time of their lives to give someone this chance. How do you say thank you for that?”
Prime Minister Theresa May wrote a personal letter to Max following the Mirror’s campaign to introduce a new ‘opt out’ law in England and Wales, which will mean everyone is presumed to be an organ donor unless they opt out of the scheme.
It has already been introduced in Wales. Experts believe the new legislation could save up to 500 lives a year across the UK.
In a moving interview, one consultant told the BBC how operating theatre staff wept as a little boy aged four had saved lives with his heart, liver and two kidneys.
“I have a four-year-old girl and she was asleep wearing paw patrol pyjamas and when they brought this little lad into theatre, he was wearing the same pyjamas as my little girl,” he said.
“That little boy had died and his family wanted some good to come from it. The next day his liver and heart were transplanted, and two kidneys have been transplanted and saved lives.”
Emma added the work of the surgeons in Max’s transplant was “incredible” but that needed the courage of a donor family. Max is enjoying a “phased” return to class as he continues his recovery from his transplant. After almost a year away, he spent his first day back at St Oswald’s Church of England Primary School in Worleston, Cheshire, helping to raise money for Children in Need. The school put out a welcome banner to mark his return as Max donned his favourite ‘Minion Life’ onesie – from the hit Hollywood movie Despicable Me – to mark the occasion. After the excitement of his return to class, he completed the perfect day when he was made Young Person of the Year by the Chester Chronicle at their 30th anniversary awards. Max said he had been “really looking forward” to getting back to school, adding: “It was fantastic to get an award. I am so pleased the law is going to be changed.” The BBC film, which has a working title of Second Chance, is due to air next month. South African cardiac surgeon Christiaan Barnard performed the world’s first human-tohuman heart transplant on December 3, 1967, and the second overall heart transplant in 1964.
What they have done is amazing. I feel incredibly lucky that we have our little boy Mum Emma