What Happens When Babies With Heart Defects Become Adults? ESC guidelines for the management of adult congenital heart disease – sciencedaily


More than 90% of babies born with heart defects survive to adulthood. As a result, there are now more adults living with congenital heart disease than children. These adults suffer from a chronic illness that lasts a lifetime and the European Society of Cardiology (ESC) has published advice on how to give the best possible chance of leading a normal life. The guidelines are published online today in European Heart Journal,1 and on the CES website.2

Congenital heart disease refers to any structural defect in the heart and / or large vessels (those directly connected to the heart) present at birth. Congenital heart disease affects all aspects of life, including physical and mental health, socialization, and work. Most patients are unable to exercise at the same level as their peers, which, along with awareness of having a chronic illness, affects mental well-being.

“Having congenital heart disease, requiring long-term follow-up and treatment, can also impact social life, limit employment opportunities and make it difficult to obtain insurance,” said Prof Helmut Baumgartner, chair of the guidelines. Working group and responsible for congenital and valve heart disease in adults at the University Hospital in Münster, Germany. “Guiding and supporting patients in all of these processes is an integral part of their care. “

All adults with congenital heart disease should have at least one appointment at a specialist center to determine how often they should be seen. Teams at these centers should include specialist nurses, psychologists and social workers as anxiety and depression are common concerns.

Pregnancy is contraindicated in women with certain conditions such as high blood pressure in the arteries of the lungs. “Pre-conception counseling is recommended for women and men to discuss the risk of abnormalities in the offspring and the option of fetal screening,” said Professor Julie De Backer, chair of the guidelines working group and cardiologist and clinical geneticist at the University Hospital of Ghent, Belgium.

Regarding sport, recommendations are provided for each condition. Professor De Backer said: “All adults with congenital heart disease should be encouraged to exercise, taking into account the nature of the underlying defect and their own abilities.”

The guidelines indicate when and how to diagnose complications. This includes proactive arrhythmia monitoring, cardiac imaging, and blood tests to detect problems with cardiac function.

Detailed recommendations are provided on how and when to treat complications. Arrhythmias are a major cause of illness and death and the guidelines stress the importance of correct and timely referral to a specialized treatment center. They also list when particular treatments should be considered, such as ablation (a procedure to destroy heart tissue and stop faulty electrical signals) and implantation of devices.

For several defects, there are new recommendations for catheter therapy. “Catheter therapy should be performed by adult congenital heart disease specialists working as part of a multidisciplinary team,” said Prof Baumgartner.

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