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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ALS Digital Storytelling: Who Are These Stories For? – Co-Created

What can digital storytelling hold when a diagnosis changes everything?In this episode, Kristy Wolfe talks with Leslie Ring Adams, executive director of the ALS Society of Alberta, about creating digital stories with people and families living with ALS. The conversation centres on a question that runs through the work: are these stories for advocacy, for education, for family, or simply for the person telling them?Leslie shares how the ALS Society of Alberta supports storytellers, why the strongest stories are often about relationships rather than the disease itself, and how legacy, consent, and community shape what happens after a story is made. They also talk about caregiving, screening stories publicly, using AI voice technology when someone has lost their speech, and why these stories can help families, clinicians, donors, and researchers understand each other more deeply.This is a thoughtful listen for healthcare teams, nonprofit communicators, caregivers, facilitators, and anyone interested in ethical digital storytelling rooted in lived experience.You’ll hear about:- why ALS stories often focus on the person, not the diagnosis- how the ALS Society of Alberta uses stories for support, education, and advocacy- what families need when deciding whether a story stays private or becomes public- the role of digital stories in legacy-making and storyteller wellbeing- how story can connect lived experience with research, care, and communityLinks Mentioned:ALS Screening Still Speaking: Young Adults, ALS, and the Moments that Shape Us Common Language Story SlamDan's Digital Story, A Better Man Ireland’s Digital Story: By Book or By Heart Payton’s Digital Story, Still My Mom ALS Society of Alberta YouTubeMike Lang StoriesAbout Our GuestLeslie Ring Adams has been with the ALS Society of Alberta since 2015 and is currently the organization’s Executive Director. Her connection to ALS began when her mother was diagnosed with the disease. After experiencing firsthand the incredible support the Society provided to her family, Leslie decided to make a career change and join the organization.While that experience brought her to the ALS Society, it is the people, the mission and the opportunity to make a difference that have kept her there. Leslie considers it an honour to walk alongside individuals and families living with ALS and to be part of a community that shows incredible strength and resilience.She is passionate about making sure people affected by ALS have the support they need today, while advocating for better treatments, supporting research and working toward a future without ALS. Hosted on Acast. See acast.com/privacy for more information.

1. ALS Digital Storytelling: Who Are These Stories For? 25:53
2. Youth Mental Health & Storyteller Wellbeing 26:41
3. Can a Story Change Veterinary Medicine? 27:40
4. Digital Stories in Community-Based Research with Carolyn Brandly 30:02
5. Using Digital Stories in Clinician Training with Dr. Tricia Williams 30:41

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