All I want for Xmas is a new heart
Brave Harry, 4, needs a lifesaving transplant
THE parents of a sick boy of four who needs a new heart have issued a Christmas appeal for a donor.
Harry Lee’s desperate mum Claire, 39, of Stourbridge, West Mids, said: “It would be the greatest gift of all.”
WHILE millions of children wait with bated breath to see what presents they have for Christmas, Harry Lee is hoping for the ultimate gift of life.
The four-year-old urgently needs a heart transplant as the one he was born with only has one side working properly.
Determined Harry has already survived four major operations to help boost his inefficient circulation.
But countless blood transfusions have left his immune system with high levels of antibodies. It means he could reject a new heart unless it is a perfect match, ruling out 87% of potential donors.
The youngster now faces a race against time to find the organ he needs, before he starts to deteriorate rapidly.
Mum Claire said: “He isn’t going to survive without a transplant.
“We know there is a shortage of organs. He could face a long wait and he doesn’t have time for that.
“I don’t know how Harry has fought through so much with half a heart. There were times we weren’t sure he was going to make it.
“But his heart has taken a battering. I worry that when Harry starts to deteriorate, he is going to deteriorate quickly. If I had one wish this Christmas, it would be that Harry doesn’t have to wait too long for a transplant. A new heart would be the greatest gift of all.”
Claire and husband Steve, both 39, face the terrifying prospect of Harry not getting a heart in time. But they are no strangers to beating the odds.
Their son survived his first open heart operation when he was just 24 hours old and another at four months.
Last year, Harry spent three months fighting for life at Birmingham Children’s Hospital after another operation failed and he suffered a stroke, sepsis, and pneumonia. He was so ill surgeons feared he would die during the surgery.
But on Christmas Eve doctors decided Harry was well enough to go home to “make some memories” with his sister Isla, who he had hardly seen.
Mum-of-two Claire said: “That was our Christmas miracle. We only started talking about the idea the day before.
“We were only allowed to bring Harry home on the condition that we took him back to hospital on Boxing Day, but when we did, they said he didn’t need to be readmitted. It was incredible.”
Claire and Steve spent five years trying for a baby before they conceived Harry through IVF. But at the 20-week scan doctors spotted he had hypoplastic left heart syndrome. The condition, which affects one in every 5,000 tots, meant the left side of his organ was too small to pump blood around his body. There is no cure.
Claire only got to cuddle her son for a few seconds when he was born, before he was taken away for treatment. Following his early operations, Harry suffered complications that damaged his vocal cords, leaving him temporarily unable to cry.
Once he was home and stable, Claire and commercial sales manager Steve, of Stourbridge, West Mids, had further IVF and conceived daughter Isla. Harry was admitted to hospital for more heart surgery in September last year.
But he suffered a stroke and lost a quarter of his body weight, had to be tube-fed special formula into his veins, and needed up to five litres of fluid drained from his chest every day. Claire added: “Harry always had a smile on his face, but we were losing the charming, fun-loving little boy we knew. He grew gaunt and miserable.
“It was heartbreaking watching him go through that and knowing it could well get worse.”
Surgeons reluctantly took Harry back to theatre for surgery, but he was so ill they had to use a technique they had never tried before. His parents were warned he might not survive. Claire said: “I had to imagine what my life would be like without Harry. I hadn’t
let myself do that before. I remember going back to my room and screaming uncontrollably. When Harry arrived back in intensive care the anaesthetist was in tears. They didn’t expect Harry to make it.” Days after Harry returned to the ward in late November, he reached a turning
point. Though still sedated, he heard his favourite DVD playing and began waving his arm in time to the music.
His recovery quickly gathered pace. He was soon propped up in bed reading the hundreds of Christmas cards he received from members of a
CLAIRE LEE MUM ON SON’S HEART ORDEAL
charity called Little Hearts Matter, which helps youngsters with half a heart and their families.
It has supported Harry’s family since his diagnosis and this year Claire is backing its Christmas campaign to Wrap a Blanket of care and support around other families. She said: “Last year, I found out for myself how it feels to see that happiness on your child’s face when they have been through so much.
“It really does mean so much to families, I can’t describe it.”
Though Harry made it home for Christmas, he had been too ill to start rehabilitation after his stroke. He had to relearn how to smile, eat, speak clearly and sit unaided. He also had to be strapped into a special frame to help him stand and took his first steps with a walking frame only in June.
Harry is now walking with a stick, though he still needs to be supported by his mum and struggles to keep pace with his little sister.
As donor organs are in such short supply, especially for children, Harry had a three-day assessment at the Freeman Hospital in Newcastle to see if he was fit enough for a transplant.
Claire, who worked as a steel company administrator until she quit to look after her son, said: “Harry’s lungs aren’t great, at one stage we feared that could rule him out of a transplant. They also had to check his liver and his veins.
“It was such a huge relief to discover his lungs were OK, but they said at the moment 87% of the donor pool would be ruled out because Harry’s antibody count was so high.”
From next spring it is hoped there will be more organs available thanks to Max and Keira’s Law, which came about after a campaign by the Mirror that will make everyone a donor unless they opt out.
It is named after Max Johnson, 11, of Winsford, Cheshire, and his heart donor Keira Ball, who died aged nine after a car accident near her home in Barnstaple, Devon, in 2017.
For information go to organdonation.nhs.uk or call 0300 303 2094.
You can support the Little Hearts Matter Christmas appeal on visufund. co.uk/lhm-wrap-a-blanket
He could face a long wait and he doesn’t have time for that