Ten year old Erin has just celebrated her ten 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 to Leeds General Infirmary (LGI).
Erin had the surgery and recovered with a lot of great care from staff in LGI but we were told it would be six months before we would know if it had been completely successful. Not long after it became apparent her liver was damaged beyond repair and that she would need a liver transplant. We were referred back to LGI for a transplant assessment in early 2011, to see if the doctors thought it was a treatment option.
A transplant was Erin’s only hope
During the assessment doctors talked about survival rates to successful milestones but these seemed like impossible dreams. However 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 the wait was short, after only eight days a new liver was gifted to her. The transplant was successful and we returned home some weeks later with a completely different 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. Earlier this year we celebrated one of those big milestones the doctors had talked about at the assessment – Erin’s 10 year post transplant anniversary. It may sound like a strange thing to celebrate, it is certainly bittersweet knowing it is a very different milestone for her donor family, however it feels like reaching this stage deserves some recognition and reflection. Recognition of Erin’s inner strength and determination and the amazing medical teams who have kept her so well for 10 years and reflection of the legacy her donor left.
We think of her donor family often and hope they find some comfort in knowing many great things have come from their gift.
Since transplant Erin’s health has been excellent, she is growing up to be a compassionate, thoughtful, intelligent person with a passion for music and a lot of sarcasm. She copes very well with the medical management involved in keeping her healthy. Children who have had transplants do have to deal with a lot of medical procedures and restrictions, we were very lucky to have excellent play therapists involved to help her cope.
Erin has thrived since her transplant
Another thing that has helped us cope as a family has been the CLDF. Knowing they are funding research to improve care and improve treatments is so incredibly comforting. In the early days they were on hand with information leaflets and facts 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 will be there for her and really understand what it is like to navigate the challenges to come, teenage years, employment and 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 now look forward towards celebrating her 20th post-transplant anniversary knowing we have all the people around us we need to help us get there.
Erin with her parents Jamie and Kirstin and brother Owen
