Beyond Discharge: Stories from the NICU
The transformative power of digital storytelling in healthcare advocacy was beautifully illustrated in our recent Co-Created conversation with Fabiana Bacchini, Executive Director of the Canadian Premature Babies Foundation. As a journalist-turned-advocate whose own premature son spent five months in the NICU, Fabiana brings a unique perspective on how personal narratives can reshape healthcare practices, research priorities, and community understanding.
Learn more about the Canadian Premature Babies Foundation.
Digital storytelling represents a revolutionary approach to healthcare advocacy, particularly in specialized fields like neonatal intensive care. Unlike traditional presentations that may feel clinical or detached, digital stories combine personal narration with carefully selected imagery to create emotional connections that statistics alone cannot achieve. As Fabiana poignantly expressed, her own digital story begins with the heart-stopping line "I screamed and no one came" – recounting the traumatic moment when she performed CPR on her son after his NICU discharge when no help arrived immediately. This powerful opening instantly draws listeners into her lived experience while simultaneously demonstrating the critical importance of family integrated care and parent education in NICUs.
What makes digital storytelling particularly effective in healthcare advocacy is its ability to transcend traditional boundaries. These stories aren't limited to a single conference room or moment in time – with storyteller permission they can live online, can be shared globally, translated into multiple languages, and remain relevant for years. They serve multiple purposes simultaneously: educating medical students about patient experiences, demonstrating the value of parent-researcher partnerships, supporting other families navigating similar journeys, and reminding healthcare providers why they chose their profession in the first place. As Fabiana noted, these stories help clinicians reconnect with their core values when they've become overwhelmed by the daily challenges of healthcare work.
Petya H. James has also created a digital story connected to the Canadian Premature Babies Foundation.
The integration of parent voices through digital storytelling represents a significant evolution in healthcare culture. Fabiana highlighted that we are "the first generation to work with researchers as the community of parents and patients" – essentially trailblazers changing how medical research and quality improvement initiatives operate. This shift is evident in conferences like EPIC (Evidence Practice for Improving Quality), where parent representation has grown from zero to twenty-two in just six years. These parents aren't token participants – they're actively shaping research priorities, quality improvement projects, and outcome measurements in ways that truly matter to families.
Episode 36 Key Messages
Digital stories have unique power to convey the emotional reality of NICU experiences
• Family integrated care research empowered Fabiana as a parent and improved her son's outcomes
• Digital stories reach audiences beyond conference rooms and remain impactful over time
• Parent stories consistently receive the highest ratings in conference evaluations
• Digital storytelling allows advocates to share impactful experiences without repeatedly reliving trauma
Perhaps most importantly, digital storytelling offers a sustainable approach to advocacy that protects the wellbeing of patient storytellers themselves. Unlike repeatedly sharing traumatic experiences verbally at conferences, which requires reliving difficult moments again and again, digital stories allow advocates to craft their narrative once and share it widely without continuous emotional taxation. This approach acknowledges the very real costs of advocacy work while maximizing impact. As healthcare continues to evolve toward more patient-centered approaches, digital storytelling stands as a powerful tool for amplifying underrepresented voices, building empathy among healthcare providers, and ultimately improving care for vulnerable populations like premature infants and their families.
About Our Guest
Fabiana 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 Bacchini 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.
