The Tutsch Family / Photos provided by family
"What is the role of a parent?" I find myself asking this question more often than I ever expected since I became a mom. Intuitively, the answer is that a parent’s main role is to keep our kids safe and guide them on their life journey. But when faced with real trials and tribulations, what does that look like?
Tim Tutsch and his family tackled these questions head on when his daughter, Isabella, began experiencing liver failure. Read on for more details about how this courageous family showed strength and tenacity when it was most needed.
An Elective Surgery
Isabella Tutsch — Izzy for short — is a 5 year-old girl living in Toronto. Her parents are Tim and Elizabeth and she has 3 siblings.
In December 2019, Izzy had an elective surgery to remove a cyst outside of her liver. While the procedure was considered routine, complications arose that led to severe sepsis, which is when the body has an extreme, and potentially deadly, response to an infection. An emergency surgery followed and recurrent infections kept Izzy in and out of hospital for 2 years.
A Liver Transplant
By August 2021 — a day after her fifth birthday — Izzy's parents were told by doctors she would need a liver transplant. Both Tim and Elizabeth were screened, but neither were a match. Their family members also were tested, but no one proved to be a match either. A community outreach campaign began and miraculously a donor was found.
By October 2021, Izzy received the life-saving transplant she needed thanks to her generous living donor. The human liver has regenerative abilities such that both Izzy and her donor, Karen, will regain full liver function. Over the course of this process, Tim and Izzy spent weeks and months in the hospital together while Elizabeth balanced time at the hospital and with their other three kids.
Check out the CTV News segment in the video below:
Words From Izzy's Parents
I spoke to Tim about fatherhood, creating the Team Izzy campaign, and what life is like today, post-Izzy’s surgery:
Tell me a bit about your kids.
"We are very lucky to have four wonderful kids. They are all unique and special. This experience has been hard on them but also character building. I’d hate to ever put one or another into a box so early in life. Izzy has, obviously, exhibited immense determination, positivity and strength but so have the others. They had to manage while we were absent. I’m looking forward to how this contributes positively to their characters."
What are your favourite weekend activities?
"Just being together. I love skiing with Elizabeth and the kids for that reason. We are all together. Through the last two years we have found more ability to have fun together at home in the garden or around the house. Now we are back to hockey, ballet, gymnastics etc. I’m so happy to see them happy."
Can you tell me what was going through your head when you first learned that Izzy would need a life-saving transplant?
"I guess everything you imagine. Angry, sad, worried, lost, confused. This should have never happened to her but the only option was to be positive and hopeful. It was totally crushing and one of the low points when we found out that we (her parents) weren’t a match. We felt lost and completely reliant on others to help us, all while we were watching Izzy get sicker every day. Each day brought its new challenges but we had to try and step away from the emotion and focus on how to help her.
A friend who became our transplant mentor said just stay hopeful and positive. That’s the magic of transplant and regenerative medicine.
We set out on an unexpected journey to publicly share our story and find her a donor. In one of a number of miracles we found a match who offered to save her life with an incredible sacrifice. The surgery day was nothing short of a miracle. Every single day with Isabella is a blessing and she amazes us with her strength and positivity. She wants to do everything. She doesn’t want to miss out on anything. We know the path ahead will come with challenges but we follow her strong lead and are ready for it together."
Can you tell me about the initiative called Team Izzy?
"Watching a young child endure trauma after trauma while holding your hand and staring into your eyes for comfort was challenging. Team Izzy came out of Elizabeth’s attempt to navigate this and help a five year old understand that even though people were poking her with needles and forcing her to do really hard things, they were trying to help her and were on her team, Team Izzy. As most things do, it started small, we got a few T-shirts made, friends made cards, but as more and more people joined “her team” it became a powerful force that really resonated with her. She found this support very motivating and encouraging as did we as her parents."
"To help give back to Sick Kids, where Izzy was treated, and raise awareness for organ donation, we started a fundraiser and it seemed fitting to call it “Team Izzy”. While we embraced our extended stay we met many other incredible families. Unfortunately, one in particular stands out as they lost their baby boy while waiting for a liver transplant. We hope to support the transplant program to help little boys like him and to support little girls like Izzy who now enter a lifelong journey with medications, immunosuppression and a bevy of potential complications. Since its inception, the campaign has raised over $200,000 for the transplant program."
No one really expects these kinds of things to happen to their young children. Did your perception of fatherhood change after this whole experience? How has this impacted what fatherhood means to you?
"Wow. That’s a loaded question. I think we both just got into motion of trying to figure out how to help. I often felt my role was to be the counterbalance to the worries and help keep Izzy positive. We both worked so hard at that but the dark worry places aren't helpful.
Mothers are so integral to each kid and a family. My job was to do the block and tackling. We also approached it all like any other challenges in life: ask questions, be kind, build relationships. I think the biggest change for me has been allowing myself to be vulnerable privately and publicly. While job one was to get Isabella healthy, jobs two and three were to protect and lift up the other kids while setting a good example. As a father I just feel even more fortunate for my family and the time we can be together."
What words of wisdom would you give to families who are going through similar challenges? How can others best support and be there for families who are going through similar challenges?
"I don’t know if I can give any meaningful advice. I wish we could make it so this wouldn’t happen to anyone. But it will. Every day. First, be a donor. Check your status online. And maybe consider being a living donor like Karen.
Second, our experience was horrible but it isn’t even close to what people live through. We were fortunate to have tremendous support from our community and family. We are so lucky.
Also, the power of community is astounding. We truly didn’t expect the outpouring of real support. Find people you can talk to as well. Our friend who became our transplant mentor played a major role here, as did other friends and family.
The main takeaways for us have been: be positive and hopeful, vulnerable and open, seek out the village that can help you, try to be kind to everyone, and just put one foot in front of the other."
Thank you so much to Tim and his family for speaking with me. I continue to be inspired and moved by this story.
In support of Team Izzy, for all sales made through our website or Indigo, Jenny & Andy will make a matching donation to SickKids (now through to Aug 31, 2022).