Leading Through Stories: Storytelling in Congenital Heart Disease Care

In a world where healthcare often seems impersonal and daunting, the art of storytelling emerges as a powerful means to bridge the gap between patients and providers, offering a sense of humanity amidst clinical settings. The latest episode of our podcast presents an enlightening conversation with Vittorio Borrelli, a man whose life is a testament to resilience and courage in the face of congenital heart disease (CHD) and cancer.

Vittorio’s story is not just about the medical battles he has fought but about the personal identity he has forged through his experiences. His narrative encapsulates the struggles and triumphs of living with CHD, the complex journey from pediatric to adult care, and the unexpected turns that life can take when you are a “heart kid” turned adult. The episode poignantly illustrates how digital storytelling can be an educational and empathy-building tool that transcends the traditional patient-healthcare provider dynamic.

The podcast delves into the creation of digital stories as resources that capture and convey the essence of patients’ experiences, often with lasting effects. It explores how Vittorio and others have used storytelling workshops to connect with their peers, leading to transformative realizations and deepened community bonds. This particular retreat in collaboration with Heart Beats Children’s Society of Calgary and Western Canadian Children’s Heart Network offered a unique opportunity for adults with CHD to share their life experiences, shedding light on the often overlooked adult perspective in CHD care.

During the episode, listeners are taken on a journey through the landscapes of healthcare and personal identity, uncovering the remarkable ways in which stories can influence perspectives and incite action. The conversation reveals how narrative medicine is not only a therapeutic tool for those telling their stories but also a means for listeners, including clinicians and families, to gain insight into the lived experiences of individuals with CHD.

Digital storytelling is also praised for its practicality, as it provides easily shareable content for events and awareness campaigns, engaging audiences without the need for extensive preparation. The podcast highlights Sickboy podcast host, Jeremie Saunders’ memorable recollection of Vittorio’s story that left a significant impact on him, showcasing the effectiveness of digital storytelling in healthcare.

As we listen to Vittorio recount meaningful moments from his life, we are reminded of the lifelines that storytelling can provide in the context of health and wellness. Whether it is Jacqui’s memorable visit to the Libin Heart Institute or Maddie’s evolving narrative during the storytelling retreat, the episode underscores the unexpected and powerful ways stories can resonate with us.

The episode concludes with an invitation to the audience to consider their own stories and the moments they would like to share. It encourages listeners to think about the power of storytelling in their own lives and in the healthcare landscape, highlighting the potential of digital narratives to craft connections, foster understanding, and promote healing.

The blog post above captures the essence of the podcast episode, “The Lifelines of Storytelling in Congenital Heart Disease Care,” inviting readers to listen and engage with the transformative power of storytelling in the context of congenital heart disease. With a focus on digital narratives, the episode offers a heartfelt exploration of the role stories play in connecting individuals, educating healthcare professionals, and strengthening communities affected by CHD.

Learn more about how Heart Beats used digital storytelling to increase impact 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?

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Youth Mental Health & Storyteller Wellbeing – Co-Created

If you care about ethical storytelling in mental health, this conversation gets right to the heart of it: how do you share lived experience in a way that informs others without forcing storytellers to relive the hardest parts again and again?Kristy Wolfe is joined by Katelyn Greer, a lived experience leader whose work spans Kickstand, peer support, youth engagement, and research. Together they revisit the digital story Katelyn created about child abuse, foster care, suicidality, and survival—and why the digital storytelling process felt different from a live interview or repeated public retelling.They talk about what a group workshop can make possible, why feedback helps sharpen the real message of a story, and how digital stories can become powerful tools for staff education, training modules, advocacy, and systems change.You’ll also hear a thoughtful discussion about what audiences miss when they default to “resilience,” why storyteller wellbeing and consent matter, and how lived experience leadership is reshaping research and youth-serving systems.In this episode:- Why digital storytelling can reduce re-traumatization- What made creating a story in community feel supportive- How Katelyn’s story has been used in mental health and training contexts- Why “resilience” can sometimes distract from accountability- How lived experience is shaping peer support and research- Why there are many paths into leadership, advocacy, and academiaA grounded, generous conversation for facilitators, researchers, nonprofits, caregivers, and anyone using digital stories with care.Other Links MentionedKatelyn's digital storyThis episode's blog postKatelyn's websiteImagine Citizens NetworkApathy is BoringDr. Georgina (Gina) DimitropoulosPaCER – Patient and Community Engagement Research, University of CalgaryAbout Our GuestKatelyn Greer is a lived-experience leader and researcher whose work in child and youth mental health is deeply informed by her own experiences of child abuse and neglect, childhood adversity, and involvement with the foster care system. Much of her work has grown from a desire to transform deeply difficult experiences into something meaningful, using what she has lived through to help create better experiences, systems, and opportunities for young people today. She leads peer support implementation for Kickstand, Alberta’s Integrated Youth Services Hubs, and also works in youth engagement and research at the University of Calgary. Her work focuses on child maltreatment, trauma, peer support, and meaningful youth engagement, with a particular interest in creating safer, more ethical ways for young people to participate in research, storytelling, and the systems that affect their lives. She is especially interested in how lived experience can be shared in ways that are powerful and meaningful while protecting the dignity, agency, and wellbeing of the person sharing their story. Hosted on Acast. See acast.com/privacy for more information.

1. Youth Mental Health & Storyteller Wellbeing 26:41
2. Can a Story Change Veterinary Medicine? 27:40
3. Digital Stories in Community-Based Research with Carolyn Brandly 30:02
4. Using Digital Stories in Clinician Training with Dr. Tricia Williams 30:41
5. Digital Stories Belong in Curriculum & Communities with Dr. Mike Lang 29:05

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