Archive for congenital heart defect
Coordinated care and research for genetic cardiovascular disorders
Genetic cardiovascular disease in children sometimes comes to light in a crisis — a sudden collapse, sudden breathing difficulty, a sudden death in the family. Or it may be part of a diverse collection of symptoms, mostly having nothing to do with the heart. Sometimes it is picked up incidentally. “From an incidental ECG finding ... Read More
Someday, this prosthetic heart valve might be the only one a child needs
More than 330,000 children worldwide are born with a heart valve defect, and millions of others develop rheumatic heart disease requiring early valve replacement. Current prosthetic heart valves are fixed in size, so typically need to be replaced every few years as a child grows. For children receiving their first replacement before age 2, that ... Read More
After beating the odds, Joey dreams of Hollywood
Joey Manzo’s biggest dream is to travel to Hollywood to meet Ellen DeGeneres. Given how many dreams he’s already made a reality, it’s likely one day he’ll make that happen too. DiGeorge syndromeDiGeorge syndrome, also called 22q11.2 deletion syndrome, is a genetic condition caused by missing a part of chromosome 22. It can cause a ... Read More
Improving developmental care for infants in the Cardiac Intensive Care Unit
Infants born with congenital heart disease (CHD) are some of the most fragile patients, often requiring surgery or other interventions in the first few months after birth. They also face a higher risk of developmental delays, learning disabilities, and behavioral problems than children born with a healthy heart. To help mitigate these developmental challenges, a ... Read More
A biventricular repair helps California girl thrive
Even before their daughter, Elyse, was born, Amanda and Ian Primavera knew their road would be a little rocky. But they had no idea how hard they’d have to push to get the care they wanted for their daughter. Ultimately, an online support group and a little perseverance helped them find the answers and treatment ... Read More
Regina’s journey with HLHS: Four years later
Regina was just 25 days old the first time she made the trip from her home in Mexico to Boston. Regina was born with a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), resulting in the underdevelopment of the left side of her heart. Her doctors in Mexico told her parents it was ... Read More
Tissue models and a gene therapy for a deadly heart arrhythmia
Catecholaminergic polymorphic ventricular tachycardia (CPVT) is a leading cause of sudden death from cardiac arrest in children and young adults. Marked by racing, irregular heartbeats, the inherited arrhythmia is typically silent until a child suddenly collapses and faints, at an average age of 12. The trigger is an adrenaline surge, caused by exercise or emotional ... Read More
Expanding on a lifetime of heart care: The BACH Program
As more patients born with congenital heart disease (CHD) live well into adulthood and older age, there is an increasing demand for clinicians who understand their complex and unique needs. Since its inception more than 25 years ago, the Boston Adult Congenital Heart (BACH) Program has been a leader in adult congenital heart disease (ACHD) ... Read More