Neurodevelopment, Advocacy & Heart Families
The throughline of this conversation is simple and urgent: Congenital Heart Disease is not only about hearts. It’s about brains, emotions, classrooms, and families learning a new language overnight. We open with the “Kitchen Table” idea—stories as living wisdom that bridges facts and life. That frame matters because parents are drowning in information yet starving for guidance. Digital storytelling gives shape to experience, turning scattered moments into a map others can follow. Across three parent narratives and two organizations, we hear the same plea: translate neurodevelopment research into everyday help, and do it early, locally, and with compassion.
The first story centres on speech. A toddler who once said apple now struggles to form words after surgery. Months of community therapy don’t stick; progress comes when the cardiac team reconnects the family to specialized neurodevelopmental care. That pivot reveals a core lesson: CHD-related neurodevelopment issues are common and often invisible until they disrupt milestones. Parents need clear referral paths, not just risk lists. Early intervention in speech is medicine for learning, behavior, and family life. The parent’s “advocacy voice” grows alongside the child’s speech, showing how caregivers become translators between cardiology, rehab, and school—and why that labor should be recognized, supported, and simplified.
The second story moves to school, where executive function becomes the missing term that finally explains daily struggles with attention, working memory, and task initiation. A private occupational therapist helps thread the needle through a fragmented system, while a neuropsychologist names what teachers are seeing. That naming unlocks support plans, compassion, and concrete strategies. Here’s the paradox: a child “looks fine” post-transplant or repair, but the body remembers stress, and the brain bears it in subtle, stubborn ways. Parents face a fresh advocacy cycle with every new classroom and provider. The fix is not heroic; it’s practical—education program plans that reflect executive functioning needs, school-based OT, skilled neuropsych testing, and clinicians who brief families on what to ask for before school starts.
The third story makes space for caregiver overwhelm. In the ICU, optimism and realism collide, and a parent freezes under the weight of fear. The story doesn’t end in that moment; it offers a lifeline list: ask for meals, lawn care, childcare, counseling, small tasks that restore motion. Caregivers are the nervous system of family care; their regulation shapes a child’s regulation. Healthcare teams can normalize this by inviting parents into rounds, using everyday language, learning siblings’ names, and suggesting concrete supports. Tiny gestures—reading to an infant in ICU, quieter rooms, a stethoscope on a sibling’s chest—signal belonging and reduce stress that compounds neurodevelopmental risk.
Episode 50 Key Messages
0:00 Setting the Table for Stories
2:46 Why Kitchen Table Nights Matter
6:31 How Digital Stories Get Made
9:09 Story Break: Unspoken by Kristi Bateman
15:24 Advocacy Lessons from Speech Delays
20:18 When to Start Neurodevelopment Talks
26:02 ICU Environment and Parent Roles
30:01 Story Break: More Than Just a Broken Heart by Kristyn Miller
34:39 Invisible Pieces and Systems Gaps
39:24 Sharing Stories with Schools
41:54 Defining CHD and Childhood Onset
45:02 WCCHN: Data with a Human Face
49:14 Conquering CHD: Tools and Advocacy
53:02 What CNOC Brings to Families
55:38 Story Break: The Overwhelm by Jennifer Siran
1:00:08 Small Supports, Big Difference
1:04:10 Parent Voices at Medical Conferences
Organizational voices add scaffolding. Western Canadian Children’s Heart Network (WHCCHN) frames data as people, co-creating resources with families and building consistent care across geography. Conquering CHD translates complexity into checklists, webinars, and policy advocacy so no one Googles alone at 2 a.m. Cardiac Neurodevelopmental Outcome Collaborative (CNOC) pushes the field forward with research and education that connect surgery to school outcomes. Together they outline a practical arc: name common neurodevelopment risks early, screen consistently, link to specialized therapies, equip schools with Executive Functioning informed plans, and nourish caregiver capacity. The call to action is not to admire the problem but to plot the path: early talk, clear maps, shared language, and stories that turn knowledge into wisdom.
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.
