Bridging Lived Experience, Storytelling & Advocacy
Stories are bridges. They carry feeling, context, and meaning across the gaps that data leaves behind. Together with Fabiana Bacchini host of the Canadian Premature Babies Foundation’s Preemie Chats, we explore how digital storytelling turns lived experience from NICU and congenital heart disease into education, advocacy, and healing. Kristy Wolfe, a preemie parent, digital storytelling facilitator, and host of Co-Created shares a deeply personal bedtime ritual that grounds her family’s coping. Simple questions like “What was the best part of your day?” and “What are you grateful for?” become anchors against fear, uncertainty, and the ongoing realities of cardiology appointments and future surgeries. This everyday practice shows how language, curiosity, and presence can shape resilience for caregivers and kids alike.
Watch the live Preemie Chat episode here
The episode moves from story to strategy. We see a digital story, just two to four minutes long, spark unexpected impact at the Pediatric Cardiac Intensive Care Society meeting. Clinicians describe how a parent’s voice said what they struggle to say to their own families. That response reveals why storytelling belongs in healthcare quality improvement, continuing education, and research translation. Kristy walks through posters and collaborations with the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC) to map early intervention eligibility across the United States, tying lived experience to equitable access. The throughline: narratives are not soft extras; they are levers for neurodevelopmental care, family-centered practice, and policy change.
Listen to the PCICS podcast about the conference here. Skip ahead to the 15 minute mark to hear about the parent panel.
We also hear from Kane, Kristy’s son, who shares his digital story day at the hospital with curiosity, humour, and agency. He names the echo, the EKG, the pacemaker, and the reality of future surgery, alongside small joys like the Lego display and missing school. That mix of honesty and lightness is the essence of pediatric resilience. The presentation then invited clinicians to reflect using prompt cards: what resonated, and what will you change in your practice? This reflective loop turns a video into an intervention, reinforcing trauma-informed care, shared decision-making, and respectful communication. It also models how to include children’s voices safely and meaningfully.
Episode 47 Key Messages
1:45 CPBF’s Preemie Chats Introduction
3:53 Framing Lived Experience And Advocacy
4:55 Hugs & Bugs - A digital story by Kristy
15:59 Stories As Conversation Starters
17:20 Posters, Conferences, and Advocacy
24:43 Kane’s Story
26:25 Prompting Reflection in Clinicians
27:53 A Child’s Voice and Agency
32:52 Emotional Labour, Consent and Story Ownership
36:11 Co‑Creating Digital Stories with Kids
37:57 Common Language DST Four Phases
40:16 Process Versus Product Goals
42:03 Care For Storyteller Wellbeing
44:08 Parent Stories Rekindle Clinicians’ Why
Process matters. Kristy outlines the Common Language DST’s four-phase method: find your story, tell your story, craft your story, share your story. The constraints are deliberate: 200–400 words, focused imagery, intentional audio, and careful pacing. Projects can be process-focused for wellbeing or product-focused for education and advocacy, often both. The team stresses consent and readiness: tell the story you own, seek a pause if the wound is fresh, and ask children for permission as they grow. Facilitation supports, but does not replace, therapy. The goal is dignity, clarity, and impact, not exposure for exposure’s sake. When done well, digital stories build community, restore clinicians’ why, and equip families to navigate care with confidence.
About Our Guests
Kristy Wolfe is a digital storytelling facilitator, host of Co-Created and owner of Kristy Wolfe Stories. She believes there is beauty in every story and she champions real stories in marketing and communication. Kristy exposes the human side of any organization, with consideration for ethics in storytelling, as well as storyteller wellness every step of the way. As a Common Language DST certified facilitator and trainer, Kristy helps individuals and social purpose organizations share meaningful stories, turning their unique experiences into compelling narratives that inspire action. Kristy shares some of her own lived experiences within the context of each workshop she facilitates to validate that authenticity, openness, and vulnerability are essential to creating meaningful digital stories.
Fabiana Bacchini is the Executive Director of the Canadian Premature Babies Foundation. She is a journalist and the published author of From Surviving to Thriving, a Mother’s Journey Through Infertility, Loss and Miracles..
While in the NICU with her surviving twin, born extremely preterm, she participated in the study of Family Integrated Care (FiCare). This led her to extensive volunteering in the NICU at Mount Sinai Hospital and to become an ambassador for FiCare, travelling across Canada and internationally to share her experience with this model of care. Her son was diagnosed with cerebral palsy, which continued to empower her to be a strong voice and advocate for premature babies and their families.
Learn more about Fabiana here.
About Co-Created
Co-Created is a podcast that takes you behind the scenes of digital storytelling. On each episode, host Kristy Wolfe dives into conversations with the storytellers and facilitators who bring digital stories to life.
If this particular conversation resonated with you, tell a friend or a colleague about Co-Created or share one of the digital stories we were talking about. You can find the stories here.
Co-Created is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers and is supported by the team at Snack Labs.
