Send us a textWhat happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw h...
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What happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.
Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.
The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.
But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.
Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.
Link to CHD Connects Hearts: https://chdconnectshearts.com/home
Anna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-hearts
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