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9. #50YearsofTransplant: Ian Sewell

Ian Sewell received his liver transplant as an infant in Edmonton and has received post-transplant care for the past seven years at BC Children’s Hospital. His mother, Amanda Sewell, shares his story.
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Can you tell us about what led to your son needing a transplant?

Ian was born with a rare liver condition called biliary atresia, with no known cause or cure. He had his first surgery at eight weeks old, with the hope of keeping him from needing a liver transplant until he was older and stronger. Unfortunately, the surgery failed and he went into liver failure. He was then listed for a transplant in December 2010 at seven months old. Never in a million years did we think we'd be put into a situation where our son would need a life-saving liver transplant. It was terrifying to be told there was a real possibility that he would become too sick to undergo a transplant, that the wait for the perfect liver would be undetermined or possibly never happen.

What was the day like when you received news that there was a liver match for your son?

At our initial assessment, we were told that being listed during Christmas time could be promising for a quicker match for Ian. But unfortunately, Christmas passed without much hope. By the middle of January he started becoming sicker and we were preparing ourselves for the possibility he would not make it to transplant. At the end of January, my phone rang, and after the first ring, I knew it was the big call we were waiting for. I answered and the woman on the other end had an offer of a liver for Ian. This began our crazy roller coaster ride of transplant and hope.

How has Ian's quality of life been since receiving transplant?

Ian's quality of life since the transplant has been a struggle and he has unfortunately suffered lifelong complications. Since the transplant, he has had over 50 surgeries and procedures for various complications. Amazingly, through all of his struggles, he is a very happy boy who rolls with whatever is thrown at him with a smile. When he is healthy, he enjoys many things a typical 8-year-old boy would— hockey, baseball, golf, arts and crafts, books and playing with his brother, sister and dog. Every day is one more day of life that he would not have had without his transplant.

How important is organ donation and discussing one's decisions to donate to your family?

Before our personal experience with transplant, organ donation was a topic that was not researched or discussed amongst each other. But today we are fortunate to see the miracle of transplant in our household every day. It's so important for us to share our story as a family to help encourage other people to register to donate and to discuss their wishes with family and friends.

At eight years old, Ian is still pretty shy about opening up about his story, but as he gets older and we encourage him more, our hope is that he becomes a strong self-advocate for organ donation. It is truly the most precious gift and we want him to be proud of everything he has had to overcome.

What would you like to say to the medical teams that assisted Ian's case?

I would like to thank our medical teams here at BC Children's Hospital from the bottom of our hearts for the care and dedication they give to Ian and our family.

As a parent sometimes we assume there will always be an answer and sometimes there isn't. It's important to remember that doctors and nurses are just people as well and they don't have all the answers although they wish they did. There is so much that doctors and nurse do behind the scenes, with research and teleconferences to ensure the best solutions are delivered to their patients and, because we don't get to physically see their efforts, our appreciation can sometimes wane. Without our team, we would not be where we are today.

What is your perspective on BC's milestone of 50 years of donation and transplant?

I think it is pretty incredible to think of all of the lives that have been saved over the last 50 years of transplant in BC. Thinking of all the families who were given the gift of one more day thanks to heroes who decide to become organ donors, never ceases to move me. To take something as tragic as the loss of a loved one and turn it into something so beautiful is the greatest gift of all. I look forward to all the improvements in this field in the years to come.

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