We’re very grateful to Lisa, mum to Elijah, for her powerful account of being on the waiting list for a transplant and how organ donation has transformed her family’s lives.
Our 15-year-old son, Elijah, was born with biliary atresia and after initial surgery at four weeks, we knew he would need a liver transplant eventually. During our first stay in hospital, we were introduced to Children’s Liver Disease Foundation and through them we met families and support staff which made us feel less isolated. We began to enjoy our son, rather than projecting forward onto the what ifs and maybes.
Elijah enjoyed relatively good health with expected complications until he was around seven when masses were detected in his liver. These were monitored, measured, scanned and biopsied until eventually they became so much of a concern that we were told it was time to list him. We were incredibly scared but at the same time we were hopeful that this would give Elijah the best chance at being healthy.
He was listed for transplant in March 2019, when he was eight and we waited 11 agonising months for his liver. I liken that time to swimming under water- everything seemed slow, distant and it was hard to breathe. Every movement and decision for those11 months was difficult and carried so much weight. It was suffocating.
I received the call from the transplant coordinator at The QE at about 9am on 26th February. I was driving and pulled over. I cried and cried. For my son, for the donor, for their family. And I remember pulling myself together enough to know that from that moment I would think of this hero- the one I would never get to meet- every day. And I have. We have been lucky enough to have made contact with our donor family and I hope that it is a comfort to them to see Elijah grow and thrive and become a young adult, all because of their decision, made in the depths of despair.
Elijah’s transplant which took place at Birmingham Children’s Hospital went well and we were only inpatients for 11 days. However, we were discharged just days before the pandemic and lockdown. I can never adequately describe how crippling those days were- we had managed to get Elijah a transplant, and now we were being told that he was ‘Clinically Extremely Vulnerable’ as a result. I threw myself into researching what was coming out of Central Europe, particularly Italy around survival rates of transplant patients and Elijah took part in a study for Southampton University.
Looking back, like many others, once we settled into Lockdown Life, we found a rhythm, where we all healed from the trauma of waiting for a liver for so long, from Elijah’s surgery and the impact on his siblings. Elijah did not miss out on schooling as the whole world went online. During this time, we wrote a letter to our donor’s family, Dean’s family, and we have been in contact ever since.
Before Elijah’s transplant we did not really travel, I was too scared of him getting poorly abroad, and I hyper fixated on being close to a hospital. Since his transplant he has been to Majorca, Turkey, Canada, America, Germany and Morocco. I want him- and his sisters to know- that the world is there for them to explore and be inspired by. We live our lives bravely and boldly now.
At times we are reminded that Elijah is immunosuppressed – last year he was very poorly with an infection – and we are thankful for the ongoing care he receives. But we strive forward together, making the most of opportunities and experiences, and thankful for every day,
By 2022 Elijah was able to complete in his first Transplant Games, he asked to be entered for swimming. I was surprised as he could sometimes be very conscious of his scar and he hadn’t swum regularly since pre-transplant. He medalled. I am not sure who was more shocked. When we got home, my hairdresser suggested Elijah join our local swimming club. We thought we would give it a go. He has excelled there. And his most recent Transplant Games saw him swim his personal bests and achieve two Golds and two Silvers in swimming. He is now also on his regional squad for his swimming club. For us this truly represents how transplant has changed his life: the health; vitality; energy; freedom and celebration.
