4 minute read
Matthew's Transplant Journey Continued
Above: Matthew at SickKids in Toronto before his liver transplant. Below: Matthew with his big brother, Carter.
Biliary atresia is a disease where a baby’s bile ducts don’t form properly, and bile leaks into the liver, which quickly damages it. Matthew underwent a Kasai procedure in hopes of reestablishing bile flow from the liver to the intestine. This procedure is successful in 25% to 60% of children and allows them to grow for several years, making a transplant easier in the coming years. Roughly 25% of children who have a successful Kasai procedure do not require a liver transplant. After undergoing the operation and spending 10 days in the hospital recovering, Matthew underwent testing once he was back home, and the family was informed that the procedure was unsuccessful. The family remembers feeling disappointed and hopeless but determined to continue doing all they could. On June 22nd, 2020 Matthew was admitted to SickKids Hospital in Toronto. Only four days later, Sheryl and Philip were told that only a liver transplant could save him, and Matthew was actively listed for transplant. Sheryl took a leave from work so she could stay with Matthew at SickKids. During this time, the Foundation began assisting the family with expenses like their mortgage, food, gas, and parking costs. “During a situation like this, any help you get will lessen the stress on your family and the Foundation was able to give us that assistance and ease the stress. It helped us take the financial pressure off our family during a time of enormous emotional stress, family sacrifice, and upheaval,” writes Philip.
On top of financial strain, the family was dealing with the immense pressure of the COVID-19 pandemic while in hospital. Sheryl was staying with Matthew at SickKids Hospital in Toronto and Philip was back at home caring for Carter in Guelph. Due to the COVID-19 restrictions, it was very hard for the family to see each other. Sheryl and Philip remember being separated from each other and their children was one of the most difficult parts. It began to get extremely challenging for Sheryl, Philip, and their whole family to watch Matthew get sicker and sicker. Philip’s sisters Bernice and Georgia used social media to appeal for a living liver donor for Matthew, knowing that neither Philip nor Sheryl were a match for Matthew. The Mayor of Guelph even showed her support for the family as they desperately searched for a living donor. Derek, a 25-year-old man from Guelph, saw the request and could not stand by. He knew he was within the age group and the right blood type so went in for testing to see if he was a match at Toronto General Hospital. Derek, a complete stranger to the family, was confirmed as a suitable donor and on October 8th, Matthew and Derek both went in for surgery. Derek represented hope for the family right when Matthew’s condition felt dire.
Derek was in surgery for over eight hours, while Matthew’s surgery lasted thirteen hours. Due to COVID-19, Philip was not allowed in the hospital, so Sheryl and Philip were separated while they waited for their son to be out of surgery, feeling both relieved that it was finally happening and anxious.
The surgery went well for both Derek and Matthew, who then started on the road to recovery. On November 5th, after roughly six months spent at SickKids, Sheryl and Matthew were able to return home to be reunited with Carter and Philip. Today, Matthew has regular bloodwork and is on the following medications: anti-rejection, anti-infection, antivirus, blood pressure, iron supplements, vitamin D, and aspirin. He requires closer attention than most toddlers and craves his mother’s constant attention. Matthew is “a beautiful and happy baby boy with no obvious signs of disability. He is delayed mentally, mostly in his speech. Physically he is behind in growth for his age but is crawling, active, getting into trouble and constantly showing off his infectious smile.”
The family was able to meet Derek and his fiancé on November 16th, 2020, at Matthew’s aunt’s house in Guelph. Sheryl and Philip were excited to meet their son’s angel to thank him personally for his selfless act of kindness. It was a special moment, all thanks to Derek and the gift of life.
Above: Matthew meeting his organ donor, Derek.
I never found it to be a difficult decision. As soon as I read Matthew's story and his family's plea for a donor, I wanted to volunteer. I knew the chances that I would be a match would be small, but I thought if I could at least help increase the odds that the family found a suitable donor, then that was something I should do. I knew that being the right age and having universal donor blood, I would have a better shot than most to help. Matthew is such a happy child, even when I met him—shortly after the surgery—he was all smiles and laughter. All I can say is that I was so happy I was able to help out, and that I recommend becoming a donor to everyone who asks. Don't get me wrong, it is a huge commitment, but being able to help in a situation like that easily makes it worth it. - Derek, Matthews's living liver donor
