Hope for Families of Children with Congenital Heart Defects

Book excerpt: The devastating words Congenital Heart Defect thrust parents of more than 36,000 children annually into a frightening, dark tunnel—dramatically changing the dynamics of each family. Because CHD, attacks unexpectedly, parents reel, bombarded with information regarding treatments, tests, and decisions—as parents echo, "I’ve never felt so alone. I can’t believe this is happening to us." From the initial diagnosis and throughout the daunting journey, the twelve chapters and resources in this guide weave advice, support, and hope from fellow travelers and medical professionals who come alongside through encouraging short stories, refreshing helpful hints, and inspiring scriptures and prayers. Many weary parents pull apart as communication breaks down during these devastating times—sometimes far apart. You-niquely Made is a section that helps family members appreciate different personalities and methods of coping. Overwhelmed families find comfort and courage as they read about the struggles parents face, balancing needs of their child and family (the set-aside spouses and the invisible ones—siblings) and self—the caregiver. Readers come to understand—the new normal of congenital heart disease. Heartfelt stories also include becoming your child’s advocate, reactions to stages of grief including unexpected waves and survivor’s guilt. This second book in the "You Are Not Alone" book series joins national award winning, Hope for Families of Children with Cancer, shining rays of light in the darkness.