Great Ormond Street Hospital: Three survivors and their families helped by GOSH tell their stories
Three amazing survivors share their stories with Jamie Merrill
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Your support makes all the difference.Sarah Cox, aged nine, Hertfordshire
Sarah Cox is a nine-year-old girl who lives life to the full, but her life nearly took a very different path when she contracted viral meningitis when she was just six days old.
The virus affected her heart and, at the age of just 23 days, surgeons at GOSH gave her a new heart, making her the youngest surviving heart-transplant patient in the UK at the time. She was born four weeks premature, so surgeons at GOSH actually operated on her before her due date.
Sarah’s transplant came after her family were told to prepare to say their goodbyes, as there was little hope that the doctors could save her.
“That was really painful. We had a baptism at the bedside in intensive care at GOSH. The nurses were all there and we were beside ourselves. We had to somehow keep going in the knowledge it wasn’t going to end well,” said her mother, Jennie. But then everything changed with one phone call – news from Europe that a new heart was available for tiny Sarah.
“To be told nothing could be done to then getting a glimmer of hope was madness, we were feeling such a huge mix of emotions,” said Jennie.
Sarah recovered well after the operation and, like many successful transplant patients, was able to return home within a few weeks, though she will return to GOSH for regular check-ups until she transitions to adult care.
Jennie, 42, said: “It’s not just about changing the engine, it is about making sure it runs properly and keeps going.”
Callum Turner, 16, Hockley, Essex
This spring marks a year since Callum Turner’s heart transplant. In that short time he has returned to school and has also started coaching his local football team.
“It’s great now because I have more energy than I did before and I don’t get out of breath like I used to,” said Callum. “It’s amazing, it has made a big difference to my life. I’d like to get into football coaching or something like that in the future.”
Callum’s family always knew he would need a new heart as he suffered a heart attack as a newborn, and, at just one day old, he was airlifted to his local hospital for open-heart surgery.
According to his mother, Donna, 44, he “bumbled” along for most of his childhood years but at 15 he collapsed at school with chronic heart failure and was rushed to GOSH where he was told he urgently needed a new heart. “We were shocked. We hoped he would reach adulthood before he needed a heart transplant, but he had gone from an energetic boy to an old man.”
Callum was given time to come to his own decision about the transplant and eventually agreed to be listed for transplant in August 2014. “He knew he needed it,” said Donna, “but he didn’t want it. I think he was scared, but he was in a wheelchair by that point and could hardly walk.”
While he waited for a new organ he was the first GOSH patient to be fitted with and to go home with a mechanical HeartWare device. It works like an artificial heart and allows patients waiting for a heart transplant to return to the comfort of their own homes.
Donna said: “It’s an amazing piece of kit. He rode a bike with it, went bowling and played golf. It didn’t stop him, it just meant someone had to be with him.”
Then they got the call in spring 2015 that a heart had become available. “The hospital was calm and quiet,” said Donna. “It was like it was meant to be.”
Ernie Ashcroft, seven, Lewes, East Sussex
When Ernie Ashcroft asked the staff at GOSH what would happen to his old heart, they told him: “It will go to help other people, it will go into research.”
At 12 weeks old, Ernie was diagnosed with dilated cardiomyopathy. At the time, his family were unaware that years later he would face life-changing surgery and a six-week stay at GOSH.
After his diagnosis Ernie was referred to the Evelina London Children’s Hospital, where he received treatment, but just after his sixth birthday his mother, Emma, noticed a deterioration in his condition. They had been told that his heart could get better or worse, but a string of medicines failed to help, and his parents and the doctors at GOSH agreed he would need a transplant.
“The word ‘transplant’ strikes fear into you and still even at that point I thought he won’t need that, he’ll get better – but he didn’t,” said Emma.
Remarkably, after just one week of Ernie being on an artificial heart, Emma received a 2am call to say that a potential heart had become available. Emma said: “Initially when the phone rang I really thought that something terrible had happened to Ernie because he was so weak.”
Ernie soon recovered and spent the rest of his hospital stay on Bear Ward at GOSH. It was here that he struck up an extraordinary friendship with a crane driver, who climbed a tall crane tower outside his window to work on the hospital’s new specialist heart unit, which will be supported by funds from the Give to GOSH appeal. The pair waved to each other every day and then, towards the end of his stay, the driver came in to visit Ernie and his mum.
Emma is overwhelmed by support for the Give to GOSH appeal and said of the generous donations: “I’m thrilled more patients like Ernie will get the very best care at GOSH. Ernie wouldn’t be here without the care he was given, that’s the bottom line.”
GOSH patient update: Amy Willis
Fourteen-year-old Amy Willis may be back at home thanks to her HeartWare artificial heart, but she still needs a transplant and the call could come at any moment.
The Independent’s Give to GOSH appeal has been following Amy’s progress for several months, and readers have seen her suffer a string of infections that have brought her back to GOSH from her home in Flintshire.
To her delight she was able to spend Christmas at home, but her weak immune system meant she couldn’t hug her family. Fortunately, Amy has bounced back in the New Year and is now at school four days a week, where she enjoys her food tech GCSE.
She said: “I love cooking. Chicken and mushroom pie is my best dish. I might be a cook when I’m older.”
Staff at Amy’s school and her youth club have been given training on HeartWare.
Amy has enjoyed taking part in The Independent’s appeal. She said: “It has been really weird seeing myself in the paper. All my friends have seen it.
“My school even played my video at the start of the campaign. That would have been embarrassing, but I was in hospital at the time so didn’t have to watch it with them.”
To Give to GOSH go to: http://ind.pn/1Mydxqt
To find out more about our appeal and why we're supporting GOSH go to: http://ind.pn/1MycZkr
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