Toddler who spent life in hospital is thriving after life-saving transplant

‘Cheeky’ 2-year-old Laurie’s heart started to fail at just 9-days-old. After spending his life in hospital, for his first birthday he received the greatest gift of all – a new heart.

At 9-days-old Laurie’s parents, Tom and Holly, noticed that he didn’t want to feed and was short of breath. Being cautious, they took him to his local A&E in Torbay where he collapsed. After 4 hours of resuscitation Laurie was stable enough to be blue-lighted to paediatric intensive care in Bristol Royal Hospital for Children.

Laurie was diagnosed with dilated cardiomyopathy. This is when the walls of the heart chambers become stretched and thin, which affects the heart's ability to pump blood around the body. It affects 1 in 250 people in the UK.

Following several weeks in hospital Laurie entered end-stage heart failure. Being so tiny, Laurie’s parents were told the chances of finding a donor heart were vanishingly small.

While waiting for a heart, Laurie needed to be supported with a ventricular assist device, sometimes known as a ‘Berlin Heart’. The device takes over the body’s heart function when the heart is too weak to pump sufficient blood around the body, allowing the child to grow and get stronger. This can be used while a child is waiting for transplant - and was Laurie’s lifeline. However, he first had to survive and grow to about double his size to meet the minimum weight required for a Berlin Heart.

Tom, a GP, said: “Doctors were discussing palliative care options with us, and it was clear Laurie wasn’t going to make it to transplant without a Berlin Heart. He was paralysed and stuck on a ventilator with no quality of life.”

He was transferred to GOSH where he spent weeks on the cardiac intensive care ward before having surgery to fit the Berlin Heart, offered by only 2 centres in the UK. Laurie was then placed on the transplant waiting list.

Tom and Holly, along with their eldest son Osian, lived the next year of their life in slow motion. While Laurie moved to the cardiac ward, Bear, his family permanently moved from Devon into the dedicated parent accommodation close to the hospital, provided by GOSH charity, and Osian enrolled in a local nursery.

Reflecting on that time, Holly, said: “When you have a seriously unwell child, you live in this bubble where your life completely stops but everyone else keeps on moving and living. We never went home and GOSH became Laurie’s home.

“It’s heartbreaking that you can’t share your child with friends and family in a normal way when they are critically ill, but the nurses and doctors at GOSH cared for him and truly loved him like family. We forged such amazing relationships with our team that we can look back on a lot of our time in hospital fondly.”

Just after his first birthday, which was celebrated with family and the Bear ward team, a nurse came to visit Laurie’s bedside to share the life-changing news that a heart had come available for him. 9 hours of surgery later he had a new heart. Tom said: “As soon as they put in his new heart, it started beating immediately. Since then, he has flown, and we were home 2 weeks later.”

Approaching his third birthday, Laurie loves life. The cheeky train-enthusiast is incredibly curious and is enjoying being a big brother to the latest edition to the family, 8-week-old baby Kit.

There are over 275 children waiting for an organ transplant, but only 40-50 child donors per year across the UK. Children, like Laurie, rely on families saying yes to organ donation in order to make life-saving transplants possible.

Tom, who ran the London Marathon to raise awareness of organ donation and raise vital funds for GOSH Charity, said: “There are many children across the UK awaiting life-saving transplant. Organ donation is a subject many of us struggle to discuss, especially in children, so we hope that sharing Laurie’s story will prompt discussion and thought. We are eternally grateful to Laurie’s donor family and that they said yes to organ donation during an unimaginably difficult time. We think of them every day.”

Jacob Simmonds, Consultant Cardiologist and Transplant Physician, and one of Laurie’s doctors, said: “Laurie and his family were incredible during their time waiting for a heart transplant at GOSH. The Berlin Heart provided Laurie with enough energy to grow and develop, and although his first few weeks were difficult as his body recovered from being so unwell, for most of his stay he seemed not to notice the machine.

“The reality for his parents of course was very different – waiting patiently for a donor, seeing other patients come through their operations and go home, and all the time worrying that Laurie could suffer a life-threatening complication. Thankfully, a donor organ was offered in time.

“We have the largest paediatric heart and lung transplant programme in Europe, but this is only made possible thanks to families making the incredible decision to donate when their child has sadly passed away. Our team, and all our families at GOSH, are so grateful to families who make this life-saving decision.”

At a time when more people than ever need a transplant to transform their lives, you can confirm your decision to become an organ donation on the NHS Organ Donor Register.