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9th December 2015

Saying thanks in a heartbeat

Daniel Titley found a way to show his gratitude 23 years after receiving a donor heart from 14-year-old Stephen Norris, who’d lost his life in a bike accident.

Unfortunately, he couldn’t thank Stephen himself, so he did the next best thing. He met Stephen’s mother and let her listen to her son’s heart beating inside Daniel’s chest ‒ a gift not everyone would have the courage to give (or receive), especially on national TV.

Daniel was born with complex structural defects to his heart. He spent most of his first year in the hospital, and by the age of ten he’d had several major operations. Daniel’s parents hoped that a Fontan procedure, an operation that involves connecting the veins bringing back the blood from the body directly into the lung arteries, would, at last, repair their son’s deteriorating heart, but the procedure was unsuccessful.

“My heart was simply too unhealthy,” Daniel told This Is Medtech. “By the autumn of 1991, when I was 11, my parents were told that I might not live to see my 12th birthday unless I had an immediate heart transplant. At that time heart transplants on children were still fairly new; fewer than a hundred had been performed in the UK. Luckily a donor was found in time, and in February 1992 I got my new heart,” he said.

Prior to the transplant, Daniel got tired easily and wasn’t able to play like the other kids, not to mention being in and out of hospital. Getting Stephen Norris’s heart gave Daniel a chance to lead a normal life. “I even had to do physical education at school!” he recalled.

Finding Stephen’s family

“I’d always been vaguely curious about who my donor was, and I had made occasional attempts to try and find out more,” explained Daniel. Though he knew his donor was a boy from Leeds, his research left him none the wiser. “By July 2015 I had lived twice as long with my new heart as with my old one. To mark the occasion, I decided to go to Leeds to check the local papers again and whatever other records they had there,” he said.

While he was planning his trip to Leeds, Daniel found out about a TV production company that was looking for interesting true stories to air, so he got in touch with them. The TV company was able to help him track down and arrange a meeting with Stephen’s mum Gillian.

It was an emotionally charged day, especially as it was being aired on TV, but Gillian and Daniel have no regrets. On the contrary, they hope that going public with their story will raise awareness for organ donation.

“Knowing that there are people out there given time that they wouldn’t have had without a donor is a comfort to me,” said Gillian after meeting with Daniel. Indeed, Daniel is able to lead a full life that would have been cut short had it not been for Stephen, who was carrying an organ donation card at the time of his death.

Daniel will be on immuno-suppressant drugs for the rest of his life to ensure his body doesn’t reject the transplanted heart. He also has blood tests every six weeks and sees a consultant cardiologist every three months. Once a year, Daniel goes for an annual check at the centre in Newcastle where he got the transplant.

He says most of his checks haven’t changed much over the years, but he’s glad that his annual check can now be done with a magnetic resonance imaging (MRI) scan. “Previously I had to have an angiogram, which was an invasive surgical procedure that meant I had to stay in hospital overnight. With the new scanner, I can get my annual check done in just a few hours,” he said.

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