Couverture de Neurodevelopment, Advocacy & Heart Families

Neurodevelopment, Advocacy & Heart Families

Neurodevelopment, Advocacy & Heart Families

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 Pull up a chair at our Common Language Kitchen Table Takeover and hear how stories can turn clinical facts into lived wisdom. We bring together three CHD parents and leaders from WCCHN and Conquering CHD to explore the neurodevelopment side of congenital heart disease—speech, executive function, school, mental health, and the quiet weight caregivers carry. You’ll leave with language to use, questions to ask, and resources to share—whether you’re a parent, teacher, or clinician.Episode Key MessagesKitchen Table Nights as a bridge from facts to wisdomspeech delays after surgery and the path to specialized therapyparents learning the language of advocacy alongside their childrenwhen to start conversations about neurodevelopment in CHDICU environment, parent roles, and tiny actions that matterschool transitions, executive function, and neuropsych testingmaking invisible challenges visible to teachers and principalssharing digital stories to unlock empathy and resourcesWCCHN’s co-created resources and family-centred dataConquering CHD’s tools, webinars, and policy advocacycaregiver overwhelm, regulation, and specific support asksCNOC’s education focus and why parent voices belong at conferencesAbout the Digital StoriesUnspoken: Finding our path with CHD - a digital story by Kristi Bateman“Our daughter’s diagnosis of a critical CHD was the precipice of a difficult journey. But her medical challenges were just the beginning. Her struggles with early speech set us on a path to discovering how to support her neurodevelopment and develop our own advocacy skills.”More Than Just a Broken Heart - A digital story by Kristyn Miller“Every parent has a moment when they realize just how much courage it takes to raise a child. For me, that moment began with a simple phone call from the school. What should have been a day filled with pride and excitement felt heavy with fear and memories. Our story is one of survival, strength, and learning to navigate the invisible challenges that come after the hospital stay ends. Because congenital heart disease doesn’t just change a child’s body—it changes everything.” Kristi and Kristyn’s stories were both created as part of Dr. Marsha Vasserman’s Strong Hearts Growing Minds Neurodevelopment in CHD project with funding from Western Canadian Children’s Heart Network (WCCHN). The Overwhelm - A digital story by Jennifer Siran"The Overwhelm" is based on a chapter of her book “When Your World Stops; Finding Hope in Your Child’s Medical Journey”. Jennifer wrote this book because she saw the need for a resource to help transition families into the medical world. Jennifer received funding from WCCHN for her project, Caregivers Corner, which was recently shared at the Cardiac Neurodevelopmental Outcomes Collaborative annual meeting in Denver. Learn more about Caregiver’s Corner here or listen to Jen’s recent Co-Created podcast episode here.Other Links MentionedRead this episode's blog postWatch the full Kitchen Table TakeoverCheck out Common Language DSTWestern Canadian Children’s Heart Network (WCCHN) Resources: For Parents and Caregivers and Developmental CareConquering CHD Resources: Talk to Your Care Team, Resources for Bereaved Families and CHD Wise Webinars Hosted on Acast. See acast.com/privacy for more information.
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