Patients should be aware that corrective repair does not mean a cure and further surgical intervention may be required.
Patients need to be informed that having congenital heart disease (CHD) increases the risk of their own children having CHD, and that pre-conception genetic testing and fetal echocardiography may be indicated.[50]Canobbio MM, Warnes CA, Aboulhosn J, et al; American Heart Association. Management of pregnancy in patients with complex congenital heart disease: a scientific statement for healthcare professionals from the American Heart Association. Circulation. 2017 Feb 21;135(8):e50-87.
http://circ.ahajournals.org/content/135/8/e50.long
http://www.ncbi.nlm.nih.gov/pubmed/28082385?tool=bestpractice.com
As patients transition from adolescent to adult care, it is important to provide education on self-management and to help them build their medical knowledge. For example, ensure that they are equipped with the skills needed to make medical appointments and refill prescriptions, and that they understand the importance of lifestyle interventions such as weight management and non-smoking.[53]John AS, Jackson JL, Moons P, et al. Advances in managing transition to adulthood for adolescents with congenital heart disease: a practical approach to transition program design: a scientific statement from the American Heart Association. J Am Heart Assoc. 2022 Apr 5;11(7):e025278.
https://www.ahajournals.org/doi/10.1161/JAHA.122.025278
http://www.ncbi.nlm.nih.gov/pubmed/35297271?tool=bestpractice.com
Continuous neurodevelopmental assessments and customised management are essential for children with Tetralogy of Fallot, integrating medical treatments with educational support, behavioural therapy, and family counselling.[47]Sood E, Newburger JW, Anixt JS, et al. Neurodevelopmental outcomes for individuals with congenital heart disease: updates in neuroprotection, risk-stratification, evaluation, and management: a scientific statement from the American Heart Association. Circulation. 2024 Mar 26;149(13):e997-1022.
https://www.ahajournals.org/doi/10.1161/CIR.0000000000001211
http://www.ncbi.nlm.nih.gov/pubmed/38385268?tool=bestpractice.com