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Provides answers to parents' concerns about congenital heart defects, discussing the various types of problems, their causes and long-term prognoses, the treatment options available, and what parents can do to help their children.
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.
When an expectant parent is prenatally diagnosed with a congenital heart defect, they are faced with an overwhelming wealth of information to comprehend and retain. To help, Terra Lafranchi, NP-C, and the Fetal Cardiology team at Boston Children's Hospital created An Expectant Parent's Guide to Hypoplastic Left Heart Syndrome and Other Single Ventricle Defects. Covers Hypoplastic Left Heart Syndrome (HLHS), Mitral Valve Atresia (MA), Double Outlet Right Ventricle (DORV) and Hypoplastic Left Ventricle, Double Inlet Right Ventricle (DIRV), Right Dominant Unbalanced Atrioventricular (AV) Canal, Tricuspid Valve Atresia, Pulmonary Atresia with Intact Ventricular Septum (PA/IVS) and Hypoplastic Right Ventricle, Double Inlet Left Ventricle (DILV), Left Dominant Unbalanced AV Canal.
A family conquers grief and lost expectations raising their son born with half a heart, while navigating complex medical challenges.
The Social Security Administration (SSA) uses a screening tool called the Listing of Impairments to identify claimants who are so severely impaired that they cannot work at all and thus immediately qualify for benefits. In this report, the IOM makes several recommendations for improving SSA's capacity to determine disability benefits more quickly and efficiently using the Listings.
A photo documentary that explores the lives of children with congenital heart disease and includes interviews with children and their families.
Explains the causes and treatment of heart disease, describes the tests that are used to diagnose the problem, and discusses special considerations in raising a child with a heart defect