Experience Journal: Coping with a child ’s congenital heart disease

At 16 months old, Avery was diagnosed with an atrial septal defect — a hole in the wall between the heart’s upper chambers that required open-heart surgery to repair. ​ Shock, fear and pride were just a few of the emotions Avery’s parents Jessica and Andrew experienced throughout their journey coping with their daughter’s congenital heart defect (CHD). The couple found it helpful to talk through their questions and feelings with other parents of children with a CHD, as well as with Avery’s caregivers from the Heart Center at Boston Children’s Hospital. Now with two years of recovery behind them, Jessica and Andrew generously pay it forward by sharing their experience and offering guidance to other families coping with pediatric heart disease.   The Experience Journals are collections of stories, videos and personal experiences from families about what it has been like to live with their children’s illnesses. This video is part of the Heart Experience Journal, created by the Department of Psychiatry and the Heart Center. The post Experience Journal: Coping with a child’s congenital heart disease appeared first on Thriving Blog.
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories atrial septal defect Dr. Pedro del Nido Experience Journal Heart Center Source Type: news

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AbstractIn this review, we provide a brief description of recently published articles addressing topics relevant to pediatric cardiologists. Our hope is to provide a summary of the latest articles published recently in other journals in our field. The articles address (1) outcomes after anomalous aortic origin of the coronary artery repair which showed relief of ischemia in most patients with low mortality, (2) the role of lymphatic imaging to predict post-Fontan complications which showed that lymphatic imaging by MRI may have an added prognostic value, (3) European guidelines for participation in competitive sports in co...
Source: Pediatric Cardiology - Category: Cardiology Source Type: research
Am J Perinatol DOI: 10.1055/s-0040-1712964 Objective Prematurity and low birth weight (LBW) are risk factors for increased morbidity and mortality in infants with congenital heart defects (CHDs). We sought to describe survival, inhospital morbidities, and 2-year neurodevelopmental follow-up in LBW infants with CHD. Study Design We included infants with birth weight (BW)
Source: American Journal of Perinatology - Category: Perinatology & Neonatology Authors: Tags: Original Article Source Type: research
This report is the first instance in which a patient with severe PAH, survived a successful atrial septal defect (ASD) repair and bilateral lung transplantation during puerperium. Patient concerns: A 42-year-old pregnant woman with congenital heart disease (CHD) and severe PAH was admitted to our hospital for the management of pregnancy and delivery. The patient was diagnosed with severe PAH in 2013, and no significant improvements or deteriorations were found until this pregnancy-related hospital admission. Diagnosis: The patient was diagnosed with CHD and severe PAH in 2013 with color Doppler echocardiography, righ...
Source: Medicine - Category: Internal Medicine Tags: Research Article: Clinical Case Report Source Type: research
Pulmonary arterial hypertension (PAH) associated with congenital heart disease (PAH-CHD) remains a major cause of morbidity and mortality in the growing adult congenital heart disease population. In the face of sustained progress, fewer patients are presenting with severe pulmonary vascular disease (PVD) with reversal of the shunt, cyanosis and multi-organ involvement, characteristic of Eisenmenger syndrome [1]. By contrast, patients with predominant systemic-pulmonary shunts and varying degrees of PAH are more commonly encountered.
Source: International Journal of Cardiology - Category: Cardiology Authors: Tags: Editorial Source Type: research
Authors: Williams MR, Perry JC Abstract Atrial septal defects (ASDs) are the most common form of congenital heart disease. There are 4 embryologic types of ASDs, and rhythm considerations vary based on type. ASDs have left-to-right shunt and primarily right-sided volume overload. This leads to electrical remodeling that may predispose patients to atrial tachyarrhythmias and conduction disorders. Risk for arrhythmias is increased with late age of ASD repair, shunt size, other factors such as pulmonary hypertension and comorbid conditions. Arrhythmia incidence is decreased after ASD closure, but remains elevated comp...
Source: Journal of Thoracic Disease - Category: Respiratory Medicine Tags: J Thorac Dis Source Type: research
This study evaluated the safety and acute haemodynamic effects of inhaled iloprost in children with PAH associated with congenital heart disease (CHD). Children with PAH –CHD who underwent cardiac catheterization and iloprost administration in our catheter laboratory between June 2007 and October 2015 were included. Iloprost was administered by atomization inhalation and changes in hemodynamic parameters were recorded. In total, 100 children with PAH–CHD were en rolled. Median age was 13 [1.5–18.0] years and 34% were male. A ventricular septal defect was present in 84%, a patent duct in 12%, a complete at...
Source: Pediatric Cardiology - Category: Cardiology Source Type: research
Conclusions The ACHS score reached similar, good predictive power in 2 different centers. The score is a useful tool to analyze surgical outcomes and to support individual decision making.
Source: The Annals of Thoracic Surgery - Category: Cardiovascular & Thoracic Surgery Source Type: research
AbstractRationale:Pectus excavatum (PE) in the setting of congenital heart disease is not uncommon. The surgical strategy has evolved over the last 20 years from a staged approach to simultaneous repair of both defects.Patient concerns:A 3-year-old boy was admitted for elective repair of PE and atrial septal defect (ASD).Diagnoses:Clinically, there were obvious features of PE and a grade 2 systolic murmur heard loudest at the 2nd intercostal space abutting the left sternal border. Echocardiography confirmed the presence of a secundum-type ASD. Following discussions with the family, consent was obtained and the patient unde...
Source: Medicine - Category: Internal Medicine Tags: Research Article: Clinical Case Report Source Type: research
Introduction: Ebstein ’s anomaly (EA) accounts for
Source: Europace - Category: Cardiology Source Type: research
This study sought to determine whether exercise capacity, self-efficacy, and gross motor skills are associated with moderate-to-vigorous physical activity (MVPA) levels in children, and if these associations differ by congenital heart disease (CHD) type. Medical history was abstracted from chart review. We assessed MVPA levels (via accelerometry), percent-predicted peak oxygen consumption (\(V_{{{\text{O}}_{2} }} ;\) cardiopulmonary exercise test), gross motor skill percentiles (test of gross motor development version-2), and self-efficacy [children ’s self-perceptions of adequacy and predilection for physical activi...
Source: Pediatric Cardiology - Category: Cardiology Source Type: research
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