Introduction
Welcome to the Empowering NICU Parents’ Podcast!
Our podcast is dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU.
Some resources simply provide information. Others have the potential to change culture. Today’s episode is about one of those resources.
In this episode, I’m honored to be joined by Fabiana Bacchini, Executive Director of the Canadian Premature Babies Foundation, parent advocate, and an internationally respected leader in family integrated care. Fabiana’s advocacy began in the NICU with her surviving twin, Gabriel, who spent 146 days there. Since then, she has dedicated her career to ensuring that parents are recognized not as visitors, but as essential caregivers and partners in their baby’s care.
Together, we discuss how the COVID-19 pandemic led to the groundbreaking Presence Study, why its findings remain just as relevant today, and how the Presence Study Toolkit transforms those research findings into a practical implementation guide, helping NICUs translate evidence into meaningful, sustainable practice change. Having had the privilege of serving as two of the lead authors of the toolkit, Fabiana and I also share the story behind its development, the incredible collaboration that brought it to life, and why we believe this work has the potential to create lasting change for NICU families around the world.
Whether you’re a NICU parent, nurse, physician, therapist, administrator, or someone passionate about improving neonatal care, this conversation will remind you that meaningful change doesn’t always require sweeping reforms. Sometimes it begins with one small change, one conversation, and one simple shift in perspective.
The Presence Study Toolkit: Helping NICUs Translate Evidence into Practice – Empowering NICU Parents' Podcast
- The Presence Study Toolkit: Helping NICUs Translate Evidence into Practice
- Beyond the NICU: How Small Moments Shape a Developing Brain
- The Why Behind Empowering NICU Parents
- From NICU Experience to Nonprofit Mission: A Family’s Journey to Today Is a Good Day
- The Lifelong Journey and Impact of Premature Birth: What Families Should Know
Episode Sponsors
Dr. Brown’s Medical
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Our NICU Roadmap
Our NICU Roadmap is the only NICU journal parents will need. Our journal is a great resource for NICU parents with educational content, answers to many of their questions, a full glossary plus specific areas to document their baby’s progress each day while in the NICU. Our NICU Roadmap equips parents with questions to ask their baby’s care team each day as well as a designated place to keep track of their baby’s weight, lab values, respiratory settings, feedings, and the plan of care each day. Most importantly, Our NICU Roadmap guides parents and empowers them so they can confidently become and remain an active member of their baby’s care team.
Our NICU Roadmap is available for purchase on Amazon or contact us at empoweringnicuparents@yahoo.com to order in bulk at a discounted price for your hospital or organization.
Click HERE for additional information and images of Our NICU Roadmap.
Newborn Holiday Cards
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Episode 81
Our Guest
Fabiana Bacchini
Fabiana Bacchini is the Executive Director of the Canadian Premature Babies Foundation (CPBF), a journalist, and the author of From Surviving to Thriving: A Mother’s Journey Through Infertility, Loss, and Miracles.
Her advocacy began in the NICU with her surviving twin, born extremely preterm. While there, she participated in the Family Integrated Care (FiCare) study, an experience that inspired her to become a leading voice for family partnership in neonatal care. She has since shared her journey across Canada and internationally, advancing models that recognize parents as essential caregivers.
Fabiana’s advocacy deepened following her son’s cerebral palsy diagnosis, strengthening her commitment to improving outcomes for preterm and sick newborns. She works to bridge families, clinicians, and researchers, ensuring lived experience informs care, research, and system design.
She currently serves as Co-Chair of the Family Engagement Group at EPIQ and as an advisor to multiple national and international initiatives, including the Steering Committee for FiCare, Critical Care Services Ontario (ONICAC Group), Child-Bright Network, the Global Foundation for the Care of Newborn Infants (GFCNI), the Canadian Preterm Birth Network (CPTBN), and the Family Centered Care Task Force.
Her past contributions include roles with CIHR–Institute of Human Development, Child and Youth Health (IHDCYH), Sinai Health System’s Change Committee, The Change Foundation Caregiver Project, PREMSTEM, the Kids Brain Health Network (KBHN), and as a mentor with IMPaCT Trials.
Fabiana has collaborated in several publications and received multiple awards recognizing her leadership in family engagement and her impact on neonatal and pediatric care
Fabiana’s Background and Story
Fabiana lives in Toronto, Canada, but is originally from Brazil, where she lived before immigrating to Canada 24 years ago. She has two sons: one a healthy, term baby born overdue, and Gabriel, her surviving twin delivered at 26 weeks gestation who spent 146 days in the NICU and is now 14 years old. Their other twin was stillborn. Fabiana has led the Canadian Premature Babies Foundation for almost nine years.
An Unexpected and Traumatic Beginning
Fabiana explains that prematurity was never part of the conversation during her twin pregnancy. The medical team had prepared her for the possibility that one twin might not survive, but not for a premature birth. When she went into premature labor, it came as a complete shock.
She describes the first days in the NICU as foggy, with only fragmented memories. Seeing Gabriel for the first time was overwhelming. He weighed two pounds, was wrapped in a plastic bag, and had fused eyes. Having previously delivered a healthy nine-pound, four-ounce baby who came home after three days, Fabiana had no frame of reference for what a premature baby looked like or what the NICU journey would involve. As an immigrant without extended family in Canada, and with a toddler at home, she and her husband had to build an entirely new routine almost overnight.
Gabriel’s NICU course was difficult. He was ventilated for seven weeks and experienced nearly every major morbidity
Discovering Family Integrated Care (FiCare)
In the midst of this, Fabiana was invited to participate in the Family Integrated Care (FiCare) study taking place at Mount Sinai Hospital in Toronto, the original birthplace of the FiCare model. She describes signing up for the study as a turning point that, 14 years later, she can clearly identify as having changed her parenting, her perspective on life, and her entire career path.
She walks through what participating in FiCare actually looked like day to day:
Daily education sessions. Parents in the study had one hour of dedicated education every single day, a significant difference compared to attending only one or two classes per week outside the study. Sessions covered topics directly relevant to what families were experiencing in real time, from ROP to understanding the equipment surrounding their babies, and included dedicated mental health support.
Veteran parent support. The study incorporated a formal parent partner role, in which graduate “veteran parents” returned to the NICU to provide peer support at the bedside. For Fabiana, connecting with a parent who had survived the same stage of life she was living through represented something powerful: hope. Hope that life after the NICU was possible, and that some sense of normalcy could return, regardless of the outcome.
Presenting at rounds. Fabiana identifies this as the most transformative piece of her FiCare experience. Rather than simply being present during rounds, she was gradually coached, first by observing, then being invited to ask questions, and eventually presenting Gabriel’s case herself to the multidisciplinary team. She explains how meaningful this was given her cultural background: having grown up in Brazil, where patients rarely questioned doctors, she had never been invited to ask questions or push back on medical decisions before. Being coached by her bedside nurse to introduce her son, share updates, and ask questions in front of a room of ten or more specialists fundamentally changed how she saw herself as a parent and as an advocate.
She explains that this skill extended far beyond the NICU walls. After discharge, she became the one presenting Gabriel’s full history to the seven different specialists and community providers who would go on to care for him, none of whom had the same context the NICU team had. Learning to advocate at rounds, she says, was essentially training for a lifetime of advocacy that every family will eventually need, regardless of where in the world they live.
Why “Parents Are Not Visitors” Is the Heart of This Work
This message comes up again and again throughout the conversation and it is one I also feel very strongly about. Fabiana named it as the single most important takeaway from everything she has learned through FiCare, the Presence Study, and the toolkit: Parents are not visitors in the NICU. They are essential caregivers.
She explains that if a unit implements nothing else from the Presence Study Toolkit, changing the language used with families, welcoming parents as parents rather than guests, inviting them to participate in everyday caregiving tasks like diaper changes, and making skin-to-skin holding the default rather than something that has to be requested, is a meaningful and accessible first step toward real culture change.
From NICU Volunteer to Foundation Executive Director
Fabiana shares that she never set out to build a career in advocacy. About a month and a half after Gabriel’s NICU discharge, he became critically ill, and Fabiana had to perform CPR on him at home. That night, despite the trauma of the experience, she made a commitment to return to the unit and give back. She became a parent buddy through the hospital’s peer support program, matched with families based on shared circumstances such as gestational age, language, or coming home on oxygen.
From there, she was invited to speak at a conference about her experience with family integrated care, joined the FiCare Steering Committee at Mount Sinai (where FiCare originated), sat on the family advisory committee, and became involved in quality improvement and research projects. She eventually joined the board of the Canadian Premature Babies Foundation and, a year later, was asked to step into the role of Executive Director.
Fabiana explains that the foundation’s four pillars were deliberately built around the FiCare framework: support, education, advocacy, and awareness. CPBF develops educational materials, podcasts, videos, milestone cards, and parent cafés to support families through their NICU journey and beyond. One of the organization’s earliest advocacy wins, achieved before Fabiana’s time, was securing extended parental leave in Canada so that leave begins counting from the baby’s NICU discharge date rather than from birth.
COVID-19 and the Birth of the Presence Study
When pandemic restrictions abruptly separated NICU parents from their babies, CPBF responded within the first week by launching twice-weekly live-streamed education sessions on Facebook, which quickly grew a large following. Through the organization’s 4,000-member parent peer support Facebook group, and through nurses sending photos of “no visitor” signage posted in their units, Fabiana began hearing heartbreaking stories: parents who weren’t told the restrictions were unusual or wrong, families unable to switch who was present at the bedside, and parents who, once they left, could not come back.
She brought these stories to Marsha Campbell-Yeo, a professor at IWK Health in Halifax and chair of CPBF’s scientific advisory committee, who was independently surveying the restrictions happening in her own unit. Together, they applied for and received a COVID-focused CIHR grant and assembled a multidisciplinary research team that intentionally included infectious disease specialists, the very group often responsible for restrictive visitation policies, to build rigorous evidence comparing the benefits of parental presence against the actual risks of COVID-19 transmission. The research ultimately confirmed there was no evidence of any NICU outbreak ever caused by a parent.
Fabiana reflects that the pandemic did more than create a temporary crisis. It revealed just how fragile family-centered care policies and systems truly were everywhere. Parent partners and family advisors were often among the first people removed from units and excluded from decision-making tables when the crisis hit. That fragility is part of why the Presence Study’s recommendations remain just as relevant today: many units that describe themselves as practicing family-centered or family-integrated care still don’t fully live that out in daily practice.
How Stars Aligned to Bring Together the Presence Study Toolkit
After my colleague, Jaylee Hilliard and I presented “Pandemic Pandemonium” at the Gravens Conference, a study that reviewed the implications of the visitor restrictions on parents, I was invited to join the Family-Centered Care Task Force and eventually became Co-Advocacy Chair. Fueled by the same heartbreaking parent stories that had emerged during the pandemic, the FCC Taskforce advocacy group approached Fabiana and Marsha about transforming the Presence Study’s evidence-based recommendations into a practical resource hospitals could actually use to implement change.
Fabiana describes this as a dream come true. Research and recommendations are essential, but without a clear bridge to implementation, even powerful evidence can sit unused. The toolkit became that bridge, taking each of the Presence Study’s recommendations and turning it into a chapter that hospitals could act on directly.
How the Toolkit is Structured
- Each Presence Study recommendation became its own dedicated chapter
- Every chapter is co-authored by a healthcare partner and a family partner (some authors, bring both perspectives)
- Every chapter follows the same practical framework to help NICUs move from evidence to implementation:
- Awareness – Provides the evidence, educational background, and explains why the recommendation matters.
- Assessment – Offers guiding questions to help leaders and care teams evaluate their current practices, identify strengths, and uncover opportunities for improvement.
- Action – Shares practical, achievable strategies to support implementation and create meaningful, sustainable changes that strengthen family presence and family-centered care.
- Chapters include real, often heartbreaking quotes and stories directly from parents, keeping the human experience at the center of every recommendation
- Chapters can be downloaded individually or as a complete toolkit, and units are not expected to implement them in any particular order or all at once
Fabiana emphasizes that meaningful change always starts with the why. She explains that without understanding the deeper purpose behind a recommendation, like why skin-to-skin matters or why breastfeeding support matters, it simply becomes another task on a checklist rather than something a team is genuinely committed to. By centering the toolkit around real family quotes and lived experience, the goal was to remind healthcare providers that families are not numbers. They are people, with complex stories and journeys, who deserve to be partners in decision-making rather than passive recipients of care.
She also speaks directly to NICU leaders wondering where to begin: culture change happens through small, individual actions, not sweeping mandates. A bedside nurse choosing to address a parent as “mom” or “dad” rather than “visitor.” A nurse waiting for a parent to arrive before starting a care routine instead of completing it without them. Identifying which staff members are already informal champions of family presence and empowering them to help lead implementation, one small step at a time.
Behind the Scenes of Building the Toolkit
Fabiana speaks warmly about the months-long collaborative process behind the toolkit, describing the team of 23 expert authors, including researchers, clinicians, and parent advocates, as a true “dream team.” She recalls the long process of revisions over colors and illustrations between the main authors, and the deep sense of accomplishment when the final version finally came together.
She also reflects on the full-circle nature of the project. The original Presence Study began as a small grant, built largely on passion rather than funding, and it marked the first time Fabiana was listed as a co-principal investigator on a research study, something Marsha specifically advocated for. Watching that small study grow into a comprehensive, freely available implementation toolkit, now adopted well beyond Canada, is something Fabiana says she is deeply proud of.
A message for New NICU Parents
When I asked Fabiana what she would tell herself walking into the NICU for the first time 14 years ago, she reflected on how powerless and overwhelmed parents often feel in those early days, how it can feel like one step forward and two steps back, and how easy it is to feel inadequate even while doing everything you possibly can. Her advice: trust your parental instincts, release the guilt many parents carry over circumstances entirely outside their control, and remember that while the NICU journey is filled with fear, uncertainty, and grief, it is temporary. Staying present with your baby and trusting that you are doing your best for them, even amid the unknown, matters more than perfection. There is light at the end of the tunnel, and when parents are engaged as true partners in care, the entire journey becomes better for everyone involved.
Toolkit Sponsorship by AngelEye Health
I would also like to recognize AngelEye Health for sponsoring the development of the Presence Study Toolkit. Their support helped make this resource possible and reflects a shared commitment to ensuring NICU families stay connected to their infant and are informed, involved, and supported.
Closing
I would like to thank Fabiana for joining me and for so generously sharing her family’s story. Her expertise, and unwavering commitment to NICU families everywhere. It has truly been an honor to work alongside her and so many incredible clinicians, researchers, and parent advocates who poured their hearts into bringing the Presence Study Toolkit to life.
If today’s conversation resonated with you, don’t let it end here.
Download the free Presence Study Toolkit using the link in today’s show notes. Whether you’re a bedside nurse, physician, therapist, NICU leader, quality improvement specialist, parent advisor, or NICU parent, this resource was designed to bridge the gap between research and practice. It takes the evidence and recommendations from the Presence Study and translates them into a practical implementation guide that can help create meaningful, sustainable culture change within your NICU.
You don’t have to implement everything at once. In fact, I wouldn’t recommend that. Start with one chapter. One recommendation. One small change. Because small changes, rooted in purpose and guided by the why behind this work, have the power to transform the NICU experience for generations of babies and families.
Read it. Share it with your colleagues. Discuss it with your leadership team. Use it to spark conversations and inspire meaningful change within your NICU.
Together, we can create a future where every parent is recognized as an essential caregiver, every family feels informed, involved, and supported, and every baby has the opportunity to benefit from truly family-centered care.
Until next time, remember: presence is not extra care. Presence is care.
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