Experience Journal: Growing up with congenital heart disease

One in 100 babies is born with some form of congenital heart defect (CHD).  Sometimes the issue is minor and doesn’t cause serious problems. Other times, the heart can’t function properly and needs immediate, invasive surgery. As kids with CHD grow up, they learn their condition will follow them for life and need continued attention. Every CHD heart is unique, but some experiences are universal, and kids and families can help support one another through challenging times. The Heart Experience Journal, created by the Department of Psychiatry and the Heart Center, represents the “collective wisdom” of patients and families coping with pediatric heart disease. The following excerpts were taken from conversations with patients and families during their child’s inpatient stay for a heart-related issue. Read more first-hand advice from families at the Experience Journals. Conversations with kids 19-year-old boy with congenital heart disease Strength in heart is better than strength in movement. The doctor says its weak, but I say it’s strong. Why? Because I can love. I can care. I can feel. That’s not a sign of weakness, it’s a sign of life. A sign that my disadvantage is a blessing, only to make me see that everything cannot go my way. To make me more aware of this hard but beautiful world I live in. 8-year-old girl talking to a Child Life Specialist prior to an operation My heart sounds like a washing machine because it h...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Experience Journal atrial septal defect congenital heart defect congenital heart disease Heart Center Source Type: news

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AbstractPurpose of ReviewWith increasing use of prosthetic valves to treat degenerative valvular heart disease (VHD) in an aging population, the incidence and adverse consequences of paravalvular leaks (PVL) are better recognized. The present work aims to provide a cohesive review of the available literature in order to better guide the evaluation and management of PVL.Recent FindingsDespite gains in operator experience and design innovation, significant PVL remains a significant complication that may present with congestive heart failure and/or hemolytic anemia. To date, clear consensus or guidelines on the evaluation and...
Source: Current Cardiology Reports - Category: Cardiology Source Type: research
AbstractPurpose of ReviewLymphatic disorders have received an increasing amount of attention over the last decade. Sparked primarily by improved imaging modalities and the dawn of lymphatic interventions, understanding, diagnostics, and treatment of lymphatic complications have undergone considerable improvements. Thus, the current review aims to summarize understanding, diagnostics, and treatment of lymphatic complications in individuals with congenital heart disease.Recent FindingsThe altered hemodynamics of individuals with congenital heart disease has been found to profoundly affect morphology and function of the lymph...
Source: Current Cardiology Reports - Category: Cardiology Source Type: research
AbstractPurpose of reviewHeart failure remains a major cause of morbidity and mortality despite advances in guideline directed medical and electrophysiologic device therapies. Valvular heart disease (VHD) is common in heart failure patients and independently associated with poor outcomes. This review provides an update in the rapidly evolving field of transcatheter heart valve interventions (THVI) in the management of heart failure.Recent findingsAortic stenosis (AS) may cause or worsen heart failure. Functional mitral regurgitation (FMR) and functional tricuspid regurgitation (FTR) occur secondary to heart failure and con...
Source: Current Treatment Options in Cardiovascular Medicine - Category: Cardiology Source Type: research
AbstractPurpose of reviewAtrial fibrillation is the commonest sustained arrhythmia in rheumatic heart disease and is associated with significant morbidity and mortality. In this review, we discuss its epidemiology, natural course and management with special emphasis on recent developments in understanding and treatment of atrial fibrillation in rheumatic heart disease.Recent findingsUse of direct oral anticoagulants appears promising, especially in developing countries where regular coagulation monitoring is a challenge. Also, restoration and maintenance of sinus rhythm in rheumatic atrial fibrillation appear feasible and ...
Source: Current Treatment Options in Cardiovascular Medicine - Category: Cardiology Source Type: research
ConclusionHigh rates of detection are mainly due to low rates of referral when indicated and possibly parental anxiety about a CHD diagnosis.
Source: Journal of the Saudi Heart Association - Category: Cardiology Source Type: research
Jennifer D’Ercole McKenna, 49, is a patient pioneer — part of a small but growing group of middle-age adults with congenital heart disease who had surgical repair in infancy or early childhood. “It’s hard for doctors to answer questions about how long I’m going to live. I ask, ‘Will I live until my 80s?’ and their response is, ‘That’s our goal.’” In 1966, the average life expectancy for someone with Jennifer’s diagnosis, Ebstein’s anomaly, was 37 years (39 for females and 33 for males). Jennifer shares her lifetime of wisdom with parents and...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories BACH congenital heart disease Dr. Keri Shafer Dr. Michael Landzberg Dr. Sitaram Emani Source Type: news
Conclusions Better diet quality is associated with a reduced occurrence of some conotruncal and septal heart defects. This finding suggests that a reduction in certain cardiac malformations may be an additional benefit of improved maternal diet quality, reinforcing current preconception care recommendations.
Source: Archives of Disease in Childhood - Fetal and Neonatal Edition - Category: Perinatology & Neonatology Authors: Tags: Epidemiologic studies, Press releases, Congenital heart disease, Childhood nutrition, Diet, Pregnancy, Reproductive medicine, Childhood nutrition (paediatrics), Child health, Infant health, Infant nutrition (including breastfeeding) Original articles Source Type: research
Growing up with pioneering treatment is the latest What your patient is thinking piece from The BMJ. It is written by Liza Morton who was the world's first 11 day old baby with congestive heart failure to be attached to an external cardiac pacemaker for complete heart block. She was fitted with five early implantable pacemakers  by thoracotomy before age 7, she had surgical repair of her atrial septal defect and her first variable rate pacemaker in her early teens, and four further variable rate pacemakers. She describes her childhood memories of being treated for congenital h...
Source: Doc2Doc BMJ Cardiology - Category: Cardiology Authors: Source Type: forums
Finding out your child has congenital heart disease (CHD) can send you on an emotional roller coaster. “You can’t help but think, is this my fault? What did I do wrong?” says Jessica Nigrelli, whose daughter Avery was diagnosed with CHD when she was 16 months old. When Avery was a baby, she had an on-again, off-again heart murmur that was checked every three months. When the murmur persisted at 16 months, her primary care doctor recommended she see a cardiologist from Boston Children’s Hospital. At the Heart Center’s outpatient clinic in Waltham, Dr. Susan Saleeb discovered Avery’s atria...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Heart conditions cardiac surgery congenital heart disease Heart Center Source Type: news
It’s a Saturday afternoon at Fist Fitness, a boxing gym in Westford, Mass. co-owned by Joe Bellone and Sean Eklund, nephew of the famous “Irish Micky Ward.” A patron enters, slightly tired from a morning 5K run, but ready for another solid workout. It’s been a few months since she’s trained at the gym, but she remembers all of the motions: left, right, 1-2-3, uppercut–she’s in the zone. Her trainer, Eklund, kneels down to get to her eye level. Twelve-year old Hayden is just under 54” tall. Hayden Schenck is not your average sixth grader. She has a zest for adventure, a love o...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our patients’ stories congenital heart defect congenital heart disease Heart Center Source Type: news
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