When I first met Emma and her family two years ago, I could never have guessed how terribly poorly her oldest son Oli had been and her incredible story to get him the new heart he so desperately needed to live.
Born with Hypoplastic Left Heart Syndrome (HLHS), Oli lived in chronic heart failure from the day he was born. He endured four open heart surgeries, two cardiac arrests, DVT, endocarditis and had a very high risk mechanical valve fitted to his heart, all before the age of five.
“I always stayed positive though,” says Emma, “I returned to work at the family business when Oli was seven months old and tried to live a life of as much fun, love and laughter as I could, despite the fact that at every clinic appointment reminded us that one day soon Oli would need a transplant.”
Oli received only palliative care, bridging the time until a transplant was available. His complexion was blue, he relied totally on his big buggy to get around and was gasping for air. At the lowest point for the family, Oli was told a transplant would not be possible and he returned home to start primary school in 2012, with his family contemplating a future without him.
Emma continues: “Just after Christmas 2013, a miracle happened. Oli’s raging high antibodies had vanished, meaning he could now join the national heart transplant list. Maybe my constant prayers had worked.”
Oli stayed in school, with Emma keen to give him as normal a life as possible. “At Oli’s last day of term that summer, I said to his teachers that I hoped very much that I would be seeing them again in September. They just smiled. That summer Oli’s condition grew worse and while I knew he desperately needed a heart to save him, I realised that a gorgeous person would have to die to allow him to live.”
In the early hours of 19 August 2013, Emma’s prayers were answered for a second time.
“It was 3.23am, my mobile rang beside me, and I just knew this was it! The saliva vanished from my mouth when I listened to this happy northern accent telling me that a potential heart was available. I sobbed for Oli and for the donor family and then I kicked into strong mode. My bag was already packed, so I woke Oli and told him we were off an exciting journey. We were blue lighted to Manchester airport and took a private jet to Newcastle.”
Twelve hours later, following his successful heart transplant, Emma was allowed to see her beautiful boy. “The ventilator and infusions just didn’t seem to be there, all I could see was Oli with pink lips and pink cuticles, he looked so different.”
The trauma wasn’t over yet though, as the effect of the drugs made him very ill for days. “I honestly thought, how can Oli survive this? What have I allowed him to go through? The nurse reassured me that this was normal and each day he would grow stronger and she was right. On day five Oli was eating curry and playing Xbox and on day six he was in the gym – what a miracle!”
Oliver has made a full recovery from his heart transplant and continues to thrive in a new school and has found a love of sports, especially his beloved TNS football club.
“We feel like the luckiest family in the world. Our gorgeous Oli has been given the gift of life and we can never ever thank our amazing donor family enough. We think about them every day and write to them and will cherish our letter from them.”
Not content with just enjoying life as a happy, healthy family, Emma now strives to raise awareness for organ donation at every opportunity.
“I’m so passionate about awareness of organ donation, as sadly it’s a subject we don’t tend to talk about, which is understandable. But it’s crucial that we all have that important conversation with loved ones because organ donation literally saves precious lives.”
Sign the organ donor register at: www.organdonation.nhs.uk.