‘Time is running out’: Desperate mum of heart transplant boy begs for organ donation law change
The family of a sick boy in desperate need of a donor heart are calling for a change in the law to make more life-saving organs available.
Nine-year-old Max Johnson’s heart is so weakened by a life-threatening condition that he relies on a mechanical pump to help move blood around his body.
He had it fitted five months ago as a “bridge to transplant” – but is now in a race against time to find a heart that will give him the chance of life.
Worried dad Paul said: “Time is of the essence.”
The family backs the Mirror’s Change the Law for Life campaign calling for an opt-out donor system to replace the current opt-in one.
Mum Emma, 47, said: “Around 90 % of people say they would have no objection to donating an organ. But just 30% join the organ donation scheme. That’s a massive 60% gap, and many don’t tell family members about their wishes.
“We feel an ‘opt-out’ organ donation system would work better, as it does in other countries.”
She said Max had always been a lively boy, full of energy and “fit as a fiddle” until last autumn when he became pale, started to lose weight and began swallowing big gulps of air as he struggled to breathe.
At first he was diagnosed with asthma, but then he became violently ill and was rushed to hospital where a chest-X-ray found his heart was very enlarged.
He had a heart murmur that could be heard from front and back and a resting pulse of 145 beats per minute, and was diagnosed with dilated cardiomyopathy, which causes an enlarged heart.
Max was initially put on heart drug Milrinone and spent a month in the Royal Manchester Children’s Hospital.
But when there was no improvement he was sent for assessment to a specialist heart unit at Newcastle’s Freeman Hospital, 180 miles from the family home in Winsford, Cheshire.
There he was quickly placed on the urgent donor list. Emma said: “We watched him deteriorate physically and spiritually very quickly.
“It wasn’t long before they had to perform open heart surgery to fit the mechanical left ventricular assist device.
“It is known as a ‘bridge to transplant’. Once fitted, we noticed that Max’s lips were pink again, instead of pale and white, as they had been.
Max has been in hospital for over six months. For five of those, he’s been waiting for a heart – a heart which just hasn’t come yet.
“When it does, it’ll happen suddenly. But we can’t spend every day in hope, thinking it could come today, tomorrow or next week. It’s too painful. We’d be setting ourselves up for disappointment.”
Emma and Paul, 44, now split their time between the Freeman Hospital, where they stay in a flat provided by the Sick Children’s Trust, and home with their other son Harry, 11. Emma said: “We know we have to wait.
“Max has turned nine now and we’ve seen the seasons change from autumn, to winter, to spring, to summer. He’s just had a terrible bug which made him sick, and the little pump for his heart is keeping the blood moving around his body.
“That open heart surgery to fit it has prepared us for what is to come. It has ‘End Stage Heart Failure’ on his notes. That reminds us of his condition every day – we know how serious his situation is.
“We tell Max he’s waiting for the gift of life. That’s how he sees it now. Max understands that for him to receive a heart, someone has to pass away – a very difficult concept to come to terms with as an adult, let alone a child.
“I know Max is nervous about it. But he’s looking forward to getting away from the wards and moving into Scott House’s transplant flat as he starts to recover.”
The family paid tribute to the work of the Sick Children’s Trust at Freeman’s Scott House, which has enabled them to be with their son when he needs them most.
Emma said: “One of us remains by his side nearly every hour of every day – he is rarely alone. We couldn’t have done it without the Sick Children’s Trust keeping us near to Max, while he is in Newcastle.”
Brother Harry is doing a 5km park run to raise funds for the Sick Chidren’s Trust, while Max’s headteacher Alex Goodwin at St Oswald’s Worleston CofE Primary school also ran to raise £830.
And comedian David Walliams added to their fundraising efforts by donating two of his children’s books – one for brave Max, and one to be raffled.
Max is being filmed by the BBC for a documentary to mark the 50th anniversary of the first heart transplant in South Africa. Lewis Washkansky, 53, got the organ on December 3 1967 but died 18 days later from pneumonia.
- Join the organ donation register at organdonation.nhs.uk. Sign our petition at mirror.co.uk/donor. Scott House relies on donations – www.sickchildrenstrust.org
- To help raise money for The Sick Children’s Trust visit www.justgiving.com/fundraising/maxjohnson030108
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