Fifteen- year old Erin has just celebrated her 15 year transplant anniversary. Her parents, Kirstin and Jamie, share her story.
Erin was born apparently healthy in 2010 but at five weeks old she began to look a little jaundiced and a blood test revealed there was something wrong with her liver. She was diagnosed with biliary atresia, a rare liver disease requiring specialist surgery and so she would have to be transferred from her home in Scotland to Leeds General Infirmary (LGI).
Erin had the surgery and recovered well with a lot of great care from staff in LGI, we were told it would be six months before we would know if it had been completely successful. Not long after we returned home it became apparent her liver was damaged beyond repair and that she would need a liver transplant. We travelled back to LGI for a transplant assessment in early 2011, to see if the doctors thought it was a treatment option.
During the assessment doctors talked about survival rates to successful milestones such as five, 10 and 15 years post-transplant, but these seemed like impossible dreams when she was so sick. It was decided she should be listed for a liver transplant so there was at least hope. By now her condition was deteriorating. She was too ill to return home to Scotland so we would have to wait in hospital in Leeds until a liver arrived. She needed round the clock monitoring and medication, she was now miserable and suffering with the worst symptoms of liver failure.
Thankfully, after eight days, a new liver was gifted to her. The transplant surgery was successful, following some bumps during her initial recovery we returned home many weeks later with a much happier baby.
When I think back to those long eight days waiting for a call, nursing a very ill baby, we would have given anything to fast forward to better times. This year we celebrated one of the big milestones the doctors had talked about at the assessment – Erin’s 15 year post transplant anniversary. It may sound like a strange thing to celebrate such a stressful time, it is certainly bittersweet knowing it is a very different milestone for her donor family. However reaching this stage was never a ‘given’ and it feels like getting here deserves some recognition and reflection.
Recognition of Erin’s inner strength and of the amazing medical teams who have looked after her for 15 years.
Reflection of the legacy her donor left us all. We think of her donor family often, we have written to them several times to thank them though it never seems enough. Hopefully it gives them some comfort to hear about how many great things have come from their gift.
Since transplant Erin has grown to be a compassionate, thoughtful, intelligent individual with a passion for music and a strong moral compass. She embraces an active, busy life and is forging her own path to independence by embracing experiences and working hard at achieving her goals.
She plays badminton regularly, which led her to represent her country at the World Transplant Games in Perth, Australia when she was 12 years old and again in Dresden, Germany when she was 15, winning gold medals at both. More importantly she met incredible people from all over the world who have had similar journeys and shared her story to inspire others.
She has had a weekend job waitressing in a local restaurant since she was 14 years old, something she was determined to do despite an initially steep learning curve that pushed her outside her comfort zone.
She completed the Duke of Edinburgh Bronze and Chief Scout’s Platinum awards before turning 15 whilst being a member at an Explorer Scout group. As part of this she volunteers with their Cubs section and has thrived on this opportunity to develop many skills and build friendships, she is now continuing with this at Silver level.
This may all sound blindly optimistic if your child is at the start of their journey. In Erin’s words “it isn’t all sunshine and rainbows” post-transplant, there is a lot of medical management involved in keeping her healthy. It isn’t always straightforward and it is certainly not stress free. Travel to hospitals and communication with medical teams feature heavily in our lives, we joke that she needs a full- time medical secretary. Children who have had transplants do have to deal with a lot of medical procedures and sometimes restrictions on what they can do. We were very lucky to have excellent play therapists involved in her early years to help her cope with procedures. She has always amazed medics with her compliance which was developed with understanding of what they were doing and why. Now she is a young adult, keen for independence, she needs to be able to navigate her future medical management by communicating with medics and advocating for herself.
Through the last 15 years, CLDF have always been there to help us as a family. Knowing they are funding research to improve care and treatments is so incredibly comforting. In the early days they were on hand with fact-checked information leaflets that we desperately needed. Then we attended family days and met others who had walked the same path and had wonderful, happy children that gave us hope. The more events we attended, the more connections we made, with others who really understood the journey we were on. As Erin grew into her own little person she made friends with other children who faced some of the same challenges she did and these are now lifelong friends. These friends really understand what it is like to navigate post-transplant life during the teenage years, employment and now beyond into adulthood. Attending the CLDF events have brought so many positives to us all but in particular it has increased Erin’s confidence, expanded her support network and given her the chance to have wonderful experiences that would be impossible to arrange without their support.
We are very grateful for all the positives the CLDF have brought us and we can look forward towards celebrating future milestones knowing we have all the people around us we need to help us get there.
