It is often said if you want an honest appraisal of a situation, ask a child. You are likely to receive an answer that does not underscore nor overstate reality. For eight-year-old liver transplant recipient Ian Sewell, this is especially accurate, “Transplant lets you be with your family. It is hard sometimes and hurts sometimes. I must take eight different medications everyday. Some of those I must take twice a day to keep me healthy.” Born with a rare liver disease called biliary atresia, Ian underwent surgery at just eight weeks old. Unfortunately, this procedure was not effective, and in December 2010 Ian was listed for a liver transplant. Just seven weeks later, Ian’s parents received the call that a liver was available. This gift came in the nick of time as Ian only had weeks left to live.
In his short life, Ian has undergone more than 50 surgeries and procedures, countless life-threatening bleeds, endless admissions to B.C. Children’s Hospital (including a Christmas spent in the ER), frequent bloodwork and needle pokes for IV starts, and a daily regime of life-saving toxic medications. This is a lot for a young boy to endure but Ian takes a very matter-of-fact approach to his situation, “The good part of transplant life is that I get to play and go to school to see my friends. I get to play hockey and baseball with my dad and brother and I get to do fun crafts with my sister and read books with my mum. The bad parts of transplant life are all the sleepovers at the hospital. There are lots of needle pokes and things that hurt a lot. I have lots of visits to the hospital, but I am brave. I always get to stop somewhere after for a special treat.”
Transplant life affects the entire family. Several times a year, Ian travels from Chilliwack into Vancouver for appointments and tests or hospital admissions, depending on his health. This not only takes a financial toll but there is an emotional cost as well. When is the next crisis or illness that lands him in the hospital? How long will his liver sustain him? These are questions that are on everyone’s mind. Living with this fear and anxiety is not easy, but Ian’s family is all too aware how fortunate they are. Their family has remained a complete unit of five. His siblings have been able to watch their little brother grow up and his parents have experienced the joy of watching their dying baby boy regain his health. Ian’s mom describes the struggle, “Transplant means I get to see Ian grow up, live life and see the many joys that come with watching your child grow. It also means that I live with the daily fear that he may not get to grow old”.
When Ian was first transplanted, his mom Amanda gathered her courage and asked how long his new liver would last. The answers varied from eight years to 14 years, to potentially forever. The lack of clarify was unnerving and disheartening, “Transplant is a treatment not a cure so there is no guarantee. Hopefully with research leading to advances in pediatric transplant his outcome will be the very best.” Not only are safer and less potent drugs needed, but more attention needs to be given to the overall wellbeing of recipients post-transplant. Tests, hospitalizations, and procedures adversely affect recipients and their caregivers. The threat of re-transplantation weighs heavily. Amanda acknowledges post-transplant life strains the coping abilities of even the most resilient patients and families. She hops research will lessen the need for testing and minimize post-transplant-related complications, so recipients can live a life free of major worry and anxiety.
Amanda envisions a future where transplantation is more than a life-sustaining therapy, it is a cure. One transplant for life is the ultimate dream.