The Lifelines of Storytelling in Congenital Heart Disease Care

When Vittorio Borrelli, heart transplant and cancer survivor, recounts his  journey, you feel every heartbeat of his tale. Our latest episode honours the beauty of resilience through digital storytelling, providing a platform for individuals like Vittorio to share their experiences with congenital heart disease (CHD). He joins us to discuss his digital story, The Call, a narrative, emphasizing the crucial role of storytelling in connecting the dots between pediatric and adult CHD care. We delve into how sharing personal stories not only aids in healing and understanding but also strengthens community bonds among those affected by CHD.

This conversation traverses the landscape of healthcare and personal identity, highlighting digital storytelling's impact as an educational and empathy-building tool.  Sickboy podcast host, Jeremie Saunders' vivid recollection of Vittorio's digital story from the Children's Healthcare Canada conference exemplifies its potential to leave a lasting impression, sparking deep discussions and fostering connections. In this episode, we reflect on the meaningful moments shared through a digital storytelling retreat conducted in partnership with Heart Beats Children's Society of Calgary and Western Canadian Children's Heart Network. Both Jacqui's memorable visit to the Libin Heart Institute and the evolution of Maddie's story, illustrate the unexpected and transformative journey storytelling can provoke. Tune in for a heartfelt exploration of how these stories not only touch lives but also inspire action and understanding across the healthcare spectrum.

To see each of the stories created at Heart Beats digital storytelling retreat for adults with Congenital Heart Disease click here. 

About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.

Life is made up of meaningful moments—which ones do you want to share?

This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.

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Transcript

Mike Lang: 0:03

Welcome to Leading Through Stories, a podcast that explores the how and why of digital storytelling. My name is Dr Mike Lang and I'm the founder and lead instructor of Common Language Digital Storytelling. In each episode, our Level 3 facilitator, christy Wolfe, connects with storytellers or Common Language trained facilitators to learn more about the health and wellness stories that they are creating and sharing. Life is made up of meaningful moments. Which ones do you want to share?

Vittorio Borrelli: 0:31

Having these stories as a resource is also something that's become pretty handy. Kristina, myself and Cheyenne presented our stories at an event that was put on by the Westin. It was Heart Month and they were spreading some awareness to their employees and whatnot. It was just easy to go there and I didn't have to think about what story am I going to tell? What am I going to say on a speech? We presented our stories, we had a Q&A. It's just. We put the work in at that workshop and the payoff is incredible because we have that resource now and then. Resource is just so open to everyone else if the storyteller chooses to share it.

Kristy Wolfe: 1:21

With me today is Vittorio Borelli. Now I know Vittorio because he did a digital storytelling workshop with me. But, vittorio, will you introduce yourself to our audience?

Vittorio Borrelli: 1:30

I am Vittorio Borelli. I am a CHD kid well, now adult. I was born with Tetralogy of Hello and Corrugation of the Aorta. I had my first heart surgery at 11 days old and then had two more following up, at 18 months old and at two and a half years old. The last one was my Fontan. Yeah, everything went well until I was a teenager, as things happen. And then, at 18, I had a heart transplant. Things happen. And then, at 18, I had a heart transplant. After my heart transplant, I was diagnosed with cancer at the age of 28,. At the age of 28. And yeah, so I guess you could say I'm kind of just someone who's been in the healthcare system my whole life and seen it through many different lenses, not just cardiac but oncology. Yeah, so that's kind of who I am when it comes to yeah, how we know each other.

Kristy Wolfe: 2:40

Because Christina McGuire and I were funded by Western Canadian Children's Heart Network along with Vittorio to do a digital storytelling workshop for adults with congenital heart disease. So Vittorio was awesome. He wrangled a whole bunch of people, so we had six participants that all were like sure, Vittorio, we'll do it, because you said we should do it. And in different ways, they were connected to an organization called Heartbeats. Will you explain a little bit about Heartbeats?

Vittorio Borrelli: 3:05

Yes, absolutely so. Heartbeats is an organization that supports families with children born with CHD. It was founded in 1987 and my family got connected with them in 1989 when I was born, and ever since then it's been a growing, thriving organization that provides all kinds of support for families with CHD. I've been on the board of Heartbeats for the last six years and been running their youth group for about the same, about seven, and been running their youth group for about the same, about seven, and it's been an incredible organization for 35 plus years, 37, 37 years now. So wow, that's that's saying it out loud, kind of boggles my mind. 37 years, wow.

Kristy Wolfe: 3:59

Heartbeats is based in Southern Alberta and so it supports the families in Southern Alberta. For those of you not in the congenital heart world, when a kiddo with congenital heart disease needs a surgery, they go up to Edmonton. So this is one of the ways that HeartBeats gets involved is by supporting families as they are going up to Edmonton for treatment or for surgery. You have been involved for a long time, and what got you involved? Why did you think, yeah, let's, let's do this digital storytelling idea with adults with congenital heart disease, bringing a group of people together. What struck you out of that idea?

Vittorio Borrelli: 4:33

I think that there was a big gap between children, pediatrics and adult care, pediatrics and adult care and kind of telling the stories of us adults. You hear all these stories about families and children that are dealing with this but you never hear, not, never. But it's not as common to hear experiences of the adults dealing with CHD. So I thought it was a great opportunity to get a bunch of us chd kids which are now adults together and uh tell little aspects of um of our experience, just life experience, because there's so many families that have kids and and with dealing with chd and there's so many unknowns that the parents who always I think the parents who were more concerned than the kids about the kids growing up, that really rings true for me because my son doesn't really recognize it.

Kristy Wolfe: 5:36

But I needed parents who knew what was happening and I needed actually to hear from this group of adults that all came together to do workshop and talk about their experiences growing up with congenital heart disease, because that is, I don't know what to expect and hearing like when we were sitting around for our weekend workshop, I learned so much like more than most parents, I think, get to in this situation, and Christina and I talked about it.

Kristy Wolfe: 6:00

We're both parents of kiddos with congenital heart disease. Christina and I talked about it. We're both parents of kiddos with congenital heart disease and it wasn't easy to hear those stories of what everybody had experienced growing up. There's lots of threads we could pick out of growing up, feeling different, growing up not being able to participate in certain things. Like each story was totally different of the six that came out of it, but there were so many threads that like connected it together and I think some of the part of it that was incredible was bringing those six adults together who some of them had never met before, and like comments that were being made about like I've never been in the room with other adults with congenital heart disease and had these conversations.

Vittorio Borrelli: 6:39

Absolutely, and and I think I feel very privileged to have been part of Heartbeat since 1989 because I grew up with some of the people that were in that group of storytellers. But a few of the storytellers are new to our community and neither of them had been in the room with more than one person or anyone that has shared experiences. So bringing us all together was extremely cathartic to all of us and especially the ones that hadn't experienced that. And you know I run a youth group with Heartbeats and when we have new members that's a big thing that they say Like, wow, look at all these kids. Like they all have heart conditions. I've never met anyone and it's, it's, it's incredible to see the, the connection when, when you, when, uh, when you've been through things that no one else understands, but then you find someone who understands it and and it's, it's a connection you can't, you can't understand like ever, and and and you can't explain.

Kristy Wolfe: 7:52

it's something you experience and and getting us all together in that, in that group for the workshop that weekend, was all of us felt it, even like, I'm guessing, even you, and, yeah, 100% 100%, and so I'm just going to explain to the audience that when we did this workshop, so we did an intro session like a little bit, maybe a week and a half before we were planning on doing the retreat. So we talked about digital storytelling. People got an idea of what their story might be about and we asked them to come with a draft. And then on the weekend retreat itself, we got together. Vittorio and his family graciously gave us their house to use for the weekend, so we all got to stay together as well and we worked through story circling and putting those digital stories together over the course of that weekend.

Kristy Wolfe: 8:40

Now fast forward about six months and we did a screening in person and brought a group of Heartbeats people together. And then we did another screening that was virtual just because, again, lots of our people couldn't make it to an in-person screening, but then we got to do it virtually as well. So these digital stories have. A lot has happened with them and I want to talk about for a second, because Vittorio knows this. But Christina and I actually presented at Children's Healthcare Canada and we presented Vittorio's story and another story, maddie's story from that digital storytelling workshop. We talked about how we came together, how the stories came together, and then shared those stories, and that was pretty incredible. I have to tell you, vittorio, what did you like? You've heard lots of feedback from the screening, from the podcast, from the conference. What stood out for you in some of those experiences around sharing your story?

Vittorio Borrelli: 9:32

It's been pretty incredible to see how people interpret it, because from my perspective so just giving it a little bit away my story is about the call that I got letting me know that there was a heart available to me, and it was in the middle of the night.

Vittorio Borrelli: 9:55

My mom and dad were on their 25th wedding anniversary in Italy and I had just turned 18. So I initially said no, I can't do it without mom and dad, and and the my doctor quickly explained, this was the moment that I grew up, I was 18. Like this was a decision that had to be made by me, and so I just I found that I really wow, like making tough decisions as a young person, which it totally is, but I saw it as growing up, whereas other people saw it as different things. There's different aspects and people pick up different things from it too, so it's pretty incredible and it's only a two and a half minute story, but all these stories just stick in your head and on the podcast that you and Mike were on the Sick Boy podcast, hearing who was it?

Kristy Wolfe: 11:15

Jeremy Saunders, who's one of the Sick Boy podcast hosts, was at the Children's Healthcare Canada conference and he came to my session on digital storytelling. And so Mike Lang, who Vittorio also knows through his cancer experience, which is also just a mind blowing small world that happens in healthcare sometimes, when Mike and I were on the Sick Boy podcast, we were just talking about digital storytelling and I asked Jeremy like what he remembered or what he thought about the storytelling session, and he, probably for 10 minutes, is explaining this story. He goes into great depth about the story that he had seen, probably about three months before the recording, and so Vittoria and I were just talking about that before we started recording this podcast. You've just listened to that podcast about Jeremy, seeing your story. What stood out for you?

Vittorio Borrelli: 12:07

podcast about Jeremy seeing your story, what stood out for you, what stood out to me, was how much he remembered and how he could explain it, and in depth and in detail.

Vittorio Borrelli: 12:12

And it's only a two and a half, maybe two, two minute 45 second video. So that, just to me, shows the impact. It's short and sweet, gets to all the points and it moves people. And I remember you texted me, we had some kind of communication saying, hey, we talked about your story on this podcast before it was released and I was like oh yeah, kind of thinking, yeah, they probably mentioned it, cool, but yeah, it was pretty shocking that a podcast that I really look up to talked about. That's like stroking my ego a little bit. Yeah, it uh. Yeah, it was nice to see how it affected them and and just how it's kind of getting the word of storytelling out there, because these stories need to be told and it's not easy to tell a story kind of in that culture these days of just like the tiktok, the 15 of, just so to be able to grab someone's attention for only a couple minutes and make it stick. I think that's so valuable.

Kristy Wolfe: 13:24

And one of the things that really stands out for me is that every time that we've done a screening that you've been involved with as well, is the conversation after Making sure that we don't just watch a video and move on, but spending time talking about what resonated for people, and so having your parents on when we were doing the screening. I think your sister was there at one of them. I might've just made that up.

Vittorio Borrelli: 13:46

I don't think she was no. Maybe it's just the.

Kristy Wolfe: 13:49

Heartbeats board meeting that I'm remembering right now, possibly, yes, but that idea of just having those conversations after about what resonated for people, because I think that's when you hear it so often you think about how somebody might have watched a digital story or heard a story in an audience and didn't have an opportunity to speak up or you didn't talk to them and you have no idea how that impacted that person.

Vittorio Borrelli: 14:12

And so getting to hear Jeremy repeat your story, that's a pretty unusual experience, I would say we had breakout rooms in that um, in the virtual screening, absolutely, and in my breakout room was one of the cardiologists in Edmonton and his perspective was struck. Him which is something that was kind of common to like us heart people, was he. It was kind of at the end where he kind of said like, wow, I didn't realize how much your condition, these, these, these people that did the story, how much their condition has defined them and how it's like, how it's defined them as a person. And I guess, like when you don't see the other side and you just see the patient constantly, maybe it just doesn't click like that, but it was interesting because that's just common to me.

Vittorio Borrelli: 15:08

It's like, yeah, all of us are heart kids, that's part of our identity and just to see it click in a doctor's mind like that was kind of eye-opening. I'm like, oh, he obviously got something out of this and it was that realization. So it's just seeing people interpret it in their own brain and in their own way is kind of what I'm getting out of digital storytelling the most lately is just, yeah, seeing other people's perspectives and interpretations. It's so awesome, I love it.

Kristy Wolfe: 15:42

Yeah, well, and I think that when you bring people together and our workshop was all adults with congenital heart disease, so not the same experience, but there's some similarities but then bringing people together for a screening, who in some cases were other adults with congenital heart disease or family members or healthcare providers, and the conversations that happen then are just that much richer.

Kristy Wolfe: 16:05

Right, you're getting these different perspectives from people because you're right, often in healthcare we'll put a patient on stage and ask them to tell a story and there'll be no conversation after, and then it's just kind of you hear a patient, patient story and it tugs at your heartstrings. But I think the piece about sharing a story in a way where the storyteller has been really supported throughout the process of telling it they're not standing up on stage telling it, but they are there for questions or to have conversation after is a big part of it. And then being able to kind of have those conversations with people of different perspectives around that same issue, I think really leads to learning for both patients and families and healthcare providers.

Vittorio Borrelli: 16:49

Absolutely, and you know, having these stories as a resource is also something that's become pretty handy. Christina, myself and Cheyenne presented our stories at an event that was put on by the Westin. It was Heart Month and they were spreading some awareness to their employees and whatnot. It was just easy to go there spreading some awareness to their employees and whatnot. It was just easy to go there and I didn't have to think about what story am I going to tell? What am I going to say on a speech? We presented our stories, we had a Q&A. It's just, we put the work in at that workshop and the payoff is incredible because we have that resource now and then the resource is just so open to everyone else if the storyteller chooses to share it. So that's another thing.

Kristy Wolfe: 17:42

All of our storytellers ended up deciding that they did want to share theirs more publicly and gave permission for Heartbeats to be able to access it, as well as Western Canadian Children's Heart Network. And I have to tell you Vittorio Maddie's story. I was just working with grade eight students on digital storytelling and I showed her story to all of those grade eight students and her story the meaningful moment happens when she's in grade eight, and the conversations I got to have with grade eight students about feeling left out, about a beep test in gym, was really. It's really incredible to be able to bring stories and like, choose from stories. Like there were six participants and they're all vastly different, from growing up to heart transplant, to having your own children when you have congenital heart disease. They are totally different stories and it all started from just like tell us about growing up with congenital heart disease. What was something that you would tell people about transitions was kind of where it all started and you never know what stories are going to take you. I absolutely agree.

Kristy Wolfe: 18:40

The times that I am presenting, I often will share a digital story of my own because it introduces people to me very quickly, right? They get to see your life. They get to see images, they get to hear one part of your story, and then that can lead to so many other things. And I also find that going up in front of a group you get really nervous. You don't know what you're going to talk about, like. I just find starting with a digital story kind of eases you in. You're not worried about what story you're going to tell, and then it leapfrogs into a million different directions from there.

Vittorio Borrelli: 19:12

Yeah, I fully agree. It makes presenting not easy. Easy, but it gives you a little breathing room and then everyone's kind of on the same page once that story's finished, and yeah, and then you get to hear how people interpreted it.

Kristy Wolfe: 19:28

Yeah, it's pretty incredible. I'm glad you guys got to do that.

Vittorio Borrelli: 19:31

Absolutely yeah, and you also get to uh to share, like if someone asked me oh, what's this digital story thing? I'm like you know what? Here here's a link. This is what it is. Perfect example is uh jackie. Jackie is one of the adult storytellers I had our uh workshop and who slowly moved me so much that I got a tattoo after that, and whose story is called will blue and it's about a pig and that's all I'm going to tell you. And uh, I got a pig tattooed on my arm. Oh, yeah, this is not video, I was gonna show it. And then people ask me oh, what's that tattoo about? I'm like I'll tell you, just let me give you the link and this will explain everything. So it's, it's fun, it's it's such a good way to share things and, yeah, it's accessible.

Kristy Wolfe: 20:23

Well, that was an incredible story. I forgot I should have mentioned that one too. Jackie's story was about like being invited into a lab and they showed her a pig that was having. I guess I shouldn't tell all of it. We'll put the link to all these stories in the show notes, but not what we expected, right, like every story totally takes on its own space and I think some of the stories that ended up coming out for people within the workshop wasn't what they went in thinking. I'm going to tell a story about this. It's just, it's the way it develops and it's part of that, that story circling, getting to have conversations with other people that just build it into what it becomes well, that was maddie completely.

Vittorio Borrelli: 21:00

Her story changed overnight. The story that she brought to the workshop was not the story she told, the initial story. I should say, yeah, and it it really worked out, and she's such a wonderful writer too. I love her story, and maddie was one of our youth group kids, so I got to see her grow up from when she was. I think she was 13 when I met her. Now she's in her 20s and I remember her telling that story about the beep test too.

Mike Lang: 21:29

Oh, crazy yeah.

Vittorio Borrelli: 21:34

So it's really cool to see these kids grow up and be able to tell stories alongside them. It's been really awesome.

Kristy Wolfe: 21:44

Yeah, Thank you for all of this and sharing this so openly. So I was going to ask you, Vittorio, if you were going to do another digital story. What would you choose your moment to be?

Vittorio Borrelli: 21:55

You know, I was thinking about this just the other day and my whole transplant story is kind of a whirlwind and one part that I think I would tell a story about. So it would kind of be the continuation of my, um, my story. So my story kind of ends when I get the call and then I wake up and my mom and dad are there kind of thing now in between getting the call and getting onto the operating table. I was, that was a whole nother story. Um, I'll try and make this really quick. Um, I was, it was summertime.

Vittorio Borrelli: 22:39

Uh, I had a friend of mine sleeping over because we both worked close by each other and I was giving him a ride to work. So I had a friend over who was sleeping over. I had to send him home, obviously. But that night we were supposed to hang out with a friend of mine two friends of mine, dude, now married and I got the call and then I called them right after, like oh my God, this is what's happening, we can't hang out, like well, and they showed up to the house as the ambulance came to get me. Now, that was like saying goodbye to my friends was another experience.

Vittorio Borrelli: 23:16

But then my sister got to fly with me to Edmonton on the air ambulance and it was a surreal flight. The flight this is one of the most nervous times you could ever be having. You're on your way to get a heart transplant. I think they might have been giving me a little bit of drugs, possibly because I I had no, no worries in the moment, and it was just my sister and I having reminiscing about times at the cabin and like just, oh, do you remember this? There was, there was just a, a gap in time where it wasn't all about the transplant, there was no talk, no talk of it whatsoever, like it was, and and it wasn't something we said, oh, no, talking about this on the way, there it was. It was just a moment that I'll really treasure, yeah, and then once we like landed, we saw the ambulance waiting for us, was like, okay, reality let's do this let's go, yeah, so it was.

Vittorio Borrelli: 24:21

It was, yeah, a surreal moment, and I think that's the moment that I think I would kind of continue on ah, okay, and I, as you were saying that, I'm just wondering about your sister too.

Kristy Wolfe: 24:30

Like hearing that story from her perspective. So I'm assuming that after your family saw your digital story, that there was some conversations had yeah, yeah, because you kind of surprised them with it. They didn't see it before the screening no, my sister still hasn't seen it.

Vittorio Borrelli: 24:46

Oh my gosh. Yeah, we were just talking about that the other day. She's like I haven't even seen the story. I'm like what? But you were at the digital thing, the digital Story screening, whoops. But yeah, like my dad. Okay, my dad is Not the most emotional guy. I've seen him cry once and it was when Mike Vernon's jersey was being retired. That was it. That's the only time I've ever seen him cry. It was very random. I don't even. He doesn't even like hockey and he moved him to tears. Oh, my goodness, he won the Stanley Cup. Anyways, my dad shed a tear when talking about how, yeah, how the story really touched him and how we were always there for each other, family-wise. My aunt met us at the. It's one thing I didn't mention the story.

Kristy Wolfe: 25:41

You only have like a short period of time, right? Yeah, you have to choose what goes into it.

Vittorio Borrelli: 25:46

Exactly. So, yeah, my aunt and uncle met us at the hospital and that's kind of something we touched on when we were discussing the the story afterwards. So, yeah, it was. He kind of got a little emotional.

Kristy Wolfe: 25:57

I was like, oh, okay, getting some emotions out of dad, I like this and that flip side right Like he had a totally different experience of that moment than you did.

Vittorio Borrelli: 26:07

He painted a boat. That's another story that he could probably tell. Yeah, when I got the call, I called my parents right away. I'm like oh my god, this is what's happening. It was like 7, 8 am in the morning, I think, in Italy, maybe earlier, I don't know. And uh, him and one of my relatives were in the middle of painting a boat. I guess that day they were going to finish painting it and that was what my dad did while I was in surgery to get his mind off it. He finished painting the boat. Have something to do.

Kristy Wolfe: 26:41

That's his. That could be his story Interesting. I one of the stories that I did early on was with my mom, and so she tells the story of Kane's heart, his second heart surgery, from her perspective of, as a grandparent, waiting like not being the parent that gets to go to the hospital, and so that was an incredible story to get to talk through with my mom, like I co created it with her. So hearing her perspective when, like you're in the moment right, you're thinking about your own feelings about every one of these things that's happening, and looking back once you kind of have space from that story and getting to hear what other people, how they reacted to the same situation, is really interesting.

Vittorio Borrelli: 27:18

As you mentioned hearing new mom's perspective. This, like CHD, affects one in 100, the whole family. Well, one in 100. But but the whole family and not just the family, the extended family, like my aunts, my uncles, when I was in Edmonton luckily I have lots of family in Edmonton and that's where I was recovering but I had family coming to visit and bringing me food and whatnot, but kind of bringing it back to Heartbeats. One of their initiatives, which I think is a super valuable one, beats um. One of their initiatives which I think is a super valuable one is they do a ladies night and a men's night where anyone who's affected by a family member, or the child or the grandchild that has chd, they get together and they essentially just talk about it and they do fun activities. I think they did laser tech, I don't know. They did a arcade the other time and the lady. I don't know what the ladies did, but it's just a chance to get together.

Kristy Wolfe: 28:18

Right, it doesn't have to be. I mean, I'm going to push people to tell digital stories because I think it's awesome but, it could be anything right. It's a chance to talk about your experience, and I think that bringing people together with the opportunity to do that is a phenomenal thing.

Vittorio Borrelli: 28:33

I fully agree, and just getting the stories out there and sharing experiences, it's extremely valuable.

Kristy Wolfe: 28:40

Well, vittorio, thank you so much for coming on and talking about what it was like to do a digital story, what you've done with it. I can't wait to see what's going to happen for you next, cause I know there's a couple of things that might be going on with relation to sharing your story, and maybe we can even talk heartbeats or Western Canadian Children's Heart Network into doing another one.

Vittorio Borrelli: 29:00

Yeah, the cabin's open. That's where we had the last one is the family cabin. So yeah, just let me know, and anything I can do to help or include people, I'm sure we can get another one going. It would be a lot of fun, yep yep, I love it.

Kristy Wolfe: 29:17

Thanks, vittorio.

Mike Lang: 29:22

Thanks for listening to this episode of Leading Through Stories, presented by Common Language Digital Storytelling facilitator. Training for health and wellness change makers. Everyone has a story to tell and we would love to hear from you what resonated for you in this episode. What health and wellness story do you want to tell? You can email us at christy at commonlanguagedstorg or find us on Instagram at Leading Through Stories. Don't miss out on the next episode. Subscribe to Leading Through Stories on your favorite podcast platform or sign up for our newsletter to get new episodes straight to your inbox. Thanks again for listening and we'll see you next time.