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What happens when babies with heart defects become adults?

August 29, 2020

Sophia Antipolis, France - 29 Aug 2020: More than 90% of babies born with heart defects survive into adulthood. As a result, there are now more adults living with congenital heart disease than children. These adults have a chronic, lifelong condition and the European Society of Cardiology (ESC) has produced advice to give the best chance of a normal life. The guidelines are published online today in European Heart Journal,1 and on the ESC website.2

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

"Having a congenital heart disease, with a need for long-term follow-up and treatment, can also have an impact on social life, limit employment options and make it difficult to get insurance," said Professor Helmut Baumgartner, Chairperson of the guidelines Task Force and head of Adult Congenital and Valvular Heart Disease at the University Hospital of Münster, Germany. "Guiding and supporting patients in all of these processes is an inherent part of their care."

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

Pregnancy is contraindicated in women with certain conditions such high blood pressure in the arteries of the lungs. "Pre-conception counselling is recommended for women and men to discuss the risk of the defect in offspring and the option of foetal screening," said Professor Julie De Backer, Chairperson of the guidelines Task Force and cardiologist and clinical geneticist at Ghent University Hospital, Belgium.

Concerning sports, 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 state when and how to diagnose complications. This includes proactively monitoring for arrhythmias, cardiac imaging and blood tests to detect problems with heart function.

Detailed recommendations are provided on how and when to treat complications. Arrhythmias are an important cause of sickness and death and the guidelines stress the importance of correct and timely referral to a specialised treatment centre. They also list when particular treatments should be considered such as ablation (a procedure to destroy heart tissue and stop faulty electrical signals) and device implantation.

For several defects, there are new recommendations for catheter-based treatment. "Catheter-based treatment should be performed by specialists in adult congenital heart disease working within a multidisciplinary team," said Professor Baumgartner.
-end-
Notes to editors

Authors: ESC Press Office
Mobile: +33 (0)7 85 31 20 36
Email: press@escardio.org

The hashtag for ESC Congress 2020 is #ESCCongress.

Follow us on Twitter @ESCardioNews

Funding: None.

Disclosures: The disclosure forms of all experts involved in the development of these guidelines are available on the ESC website http://www.escardio.org/guidelines.

References and notes

12020 ESC Guidelines for the management of adult congenital heart disease. European Heart Journal. 2020: https://academic.oup.com/eurheartj/article-lookup/doi/10.1093/eurheartj/ehaa554

2
Download the free ESC Pocket Guidelines App for all mobile devices.

About the European Society of Cardiology

The European Society of Cardiology brings together health care professionals from more than 150 countries, working to advance cardiovascular medicine and help people lead longer, healthier lives.



ESC Congress is the world's largest gathering of cardiovascular professionals contributing to global awareness of the latest clinical trials and breakthrough discoveries. ESC Congress 2020 takes place online from 29 August to 1 September. More information is available from the ESC Press Office at
press@escardio.org.

European Society of Cardiology

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