Fifteen families came together this month in a powerful and emotional reunion to celebrate their children, all of whom have been treated at the Freeman Hospital and Great Ormond Street Hospital, and many of whom have undergone life-saving heart transplants.
The families all share a unique and difficult journey: their children required the Berlin Heart Ventricular Assist Device (VAD) – a mechanical pump used to support children and adults with severe heart failure while they wait for a transplant or until their heart recovers and the device can be removed. The gathering, organised by dedicated NHS staff, and supported by Newcastle Hospitals Charity was the first event of its kind in the UK and brought together families who formed deep bonds during extended hospital stays.
More than just a celebration, the event served as a chance for the children to reconnect with friends from their time in hospital, meet others who have been through similar experiences, and importantly, remember friends they’ve lost and honour the selfless families who said yes to organ donation.
Terry Archbold, father of four-year-old Bea, who received a heart transplant in 2023 after waiting on the transplant list for 14 months, reflected on the day:
“This was a special day for all of us. Bea was overjoyed to meet up with her ‘ward sister’, a fantastic friend who is now 11, who helped teach Bea to walk on the ward whilst they were both undergoing treatment. Bea also made a new friend, bonding over their similar scars.
“It was a day filled with hope, a celebration of life made possible through organ donation. As we remembered Bea’s donor and those children on the Unit who didn’t survive, it made many of us want to redouble our efforts to raise awareness of organ donation.”
Claire McGraith, Paediatric Heart Failure and VAD Specialist Nurse at the Freeman Hospital in Newcastle, helped organise the event:
“This event provided families across the UK who have been impacted by Berlin Heart and transplant with an important time to regroup, reflect and relax in each other’s company.
“It reunited families who in some cases have spent over two years in hospital together, including families whose children never received that call to say a donor had been found. To be in a room with children who would not be alive if it weren’t for the Berlin Heart and the generosity of organ donation was overwhelming. To see the children active, healthy, and enjoying life was wonderful and shows the true impact of organ donation.”
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, commented:
“There are currently 40 children in the UK waiting for a heart transplant. Last year 29 children received a heart transplant, compared to 40 the previous year. This highlights the desperate need for parents and guardians to consider organ donation to help those children desperately in need of an organ transplant. Most of us would accept an organ if we needed one for ourselves or for our child, but far fewer of us have made the decision to donate.
“For many children on the transplant waiting list, their only hope is the parent of another child saying ‘yes’ to organ donation at a time of immense sadness and personal grief, yet families tell us that agreeing to organ donation can also be a source of great comfort and pride.
“We ask that families take a moment today to consider and confirm their support for organ donation on the Organ Donation Register, so it is not something you have to consider and discuss for the first time should the unthinkable happen.”
You can register your decision on the NHS Organ Donation Register here: Register your decision – NHS Organ Donation.
