Charlie, 11, has cystic fibrosis and first came to Great Ormond Street Hospital (GOSH) for a transplant assessment. His story features in the third series of the BBC Great Ormond Street documentary.
Charlie’s condition had deteriorated rapidly in the two years before he first came to GOSH. His oxygen levels had dropped dramatically, he had to wear oxygen 24/7 and he was spending two weeks in his local hospital in Leeds each month. His lungs were slowly failing.
Hope for a new life
Charlie came to GOSH to see Dr Helen Spencer, the hospital’s clinical lead for the lung transplant service, for a transplant assessment. Charlie had a lot of questions about having a lung transplant, including how long the donor lungs would last, and whether it would make a difference if he received ‘boy or girl’ lungs.
Though the prospect of a transplant was daunting, it also offered Charlie the hope of a new life. With the support of Helen and his parents Christy and Sasha, Charlie made the decision to join the transplant list. “It was a lot to take in,” says Christy. “Meeting Helen was a tremendous release - we knew we could put ourselves in her care, and she would work with us to make the right decision together.”
Waiting for the call
Charlie and his parents were warned that it could take up to two years for suitable donor lungs to become available, particularly as Charlie was so small, meaning the potential pool of donors was smaller.
However, after just 14 days on the transplant list, Charlie’s family received the life changing call – a new set of donor lungs was a match. It was one of the shortest waiting times in GOSH’s 25 year history of giving children new lungs.
As Charlie’s home near York is so far from the hospital, and the call came in the middle of the night, GOSH’s transplant co-ordinator arranged for the RAF to fly Charlie and his parents by helicopter from York racecourse to London’s Regent’s Park.
Charlie’s surgery was successful and, despite the risk of complications, his recovery went well. After two days he was able to come off the ventilator and breathe on his own.
Coming out of surgery
Charlie came out of surgery at 00.07hrs, which Christy and Sasha say is especially significant because he wants to be a spy. “I’d tell people having a lung transplant that it’s fine, because I’ve had one before,” says Charlie. “It’ll be the most amazing thing you've ever done in your life.”
Life for Charlie now
Charlie is thriving – he recently played in his first school football match, and also enjoys building dens, trampolining, riding his bike, playing computer games and ‘dune jumping’ at the beach. His parents recently took him to visit the RAF’s 202 Squadron, who flew him to London for his transplant. “I just want to do everything I can possibly do.” he says.