From those early days sitting beside her newborn's hospital bed to founding Heart of Hope-Cape Town, Monique shares with raw honesty how she transformed her personal pain into purpose. Her support group, now running for 12 years, fills a critical gap she identified during those long hospital stays – medical staff trained to heal bodies, not necessarily to hold space for parents' emotional trauma.
The conversation takes a dramatic turn when Monique reveals how her maternal instinct potentially saved her son's life. As Daniel entered his teen years, his complaints of pain were repeatedly dismissed as psychological by doctors who had known him since infancy. Only after switching to a new pediatrician did they discover his heart conduit had grown down into his stomach, displacing organs and causing genuine physical distress. This experience highlights a dangerous blind spot in CHD care–the critical transition period between ages 10-21 when patients are most likely to fall through the cracks.
Perhaps most eye-opening is Monique's perspective on global CHD care disparities, comparing attitudes toward heart interventions between North and South India, and advocating passionately for what the CHD community needs most: to become "one voice" as prominent as the condition itself, which remains the number one birth defect worldwide.
Whether you're a heart parent seeking community, a medical professional wanting deeper insight into patient experiences, or simply someone interested in how personal tragedy can transform into powerful advocacy, this conversation will leave you understanding why the CHD journey requires both medical expertise and emotional support that only other heart families can truly provide.Links Mentioned in the Episode:Top 20 Congenital Podcasts: https://podcast.feedspot.com/congenital_disorders_podcastsBaby Hearts Press: https://www.babyheartspress.com
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