Growing up with congenital heart disease: impact on the daily life quality from the perspective of a mother.

Main Article Content

Francesca Maria Susin


Congenital heart diseases (CHDs) are the most common and severe anomalies at birth, with over 1 million newborns affected every year in the world. Thanks to the advances in surgical treatment and medical care over the past few decades, the majority of them now reach adulthood and have an acceptable life quality expectancy.

However, growing up with a congenital heart disease is far from being an easy task, although satisfactorily managed from the strictly medical point of view. Psychosocial, educational, financial issues, among the others, highly impact on the daily life of both the patients and their families, and a comprehensive and global knowledge of what living with CHDs condition does mean still has to be built in both the scientific and social community.

The present report is based on the direct experience of the mother of a 14 years old boy born with a severe heart defect. Key points on CHD-life management are proposed and discussed following a ‘from inside’ perspective, and suggestions aimed at soliciting the design and delivery of ad-hoc support programs are given. The importance of a multidisciplinary, global approach capable of joining all the scientific, professional and socio-political parts is highlighted.

Article Details

How to Cite
SUSIN, Francesca Maria. Growing up with congenital heart disease: impact on the daily life quality from the perspective of a mother.. Medical Research Archives, [S.l.], v. 7, n. 5, may 2019. ISSN 2375-1924. Available at: <>. Date accessed: 03 june 2020. doi:
Case Reports


1. van der Linde D, Konings EEM, Slager MA, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol. 2011;58(21):2241-2247.
2. Chen Y-J, Wang J-K, Liu C-Y, Yang C-Y, Chiang Y-T, Chen C-W. Healthcare needs and quality of life in youths with congenital heart disease: Health-promoting behaviors as a mediator. J Pediatr Nurs. 2019.
3. McMurray R, Kendall L, Parsons JM, et al. A life less ordinary: growing up and coping with congenital heart disease. Coron Heal Care. 2001;5(1):51-57.
4. Chong LSH, Fitzgerald DA, Craig JC, et al. Childrens experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr. 2018;177(3):319-336.
5. Higgins SS, Tong E. Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs. 2003;18(2):93-98.
6. Rassart J, Luyckx K, Goossens E, Apers S, Klimstra TA, Moons P. Personality traits, quality of life and perceived health in adolescents with congenital heart disease. Psychol Health. 2013;28(3):319-335.
7. Rassart J, Luyckx K, Goossens E, et al. A big five personality typology in adolescents with congenital heart disease: Prospective associations with psychosocial functioning and perceived health. Int J Behav Med. 2016;23(3):310-318.
8. Wei H, Roscigno CI, Hanson CC, Swanson KM. Families of children with congenital heart disease: A literature review. Hear Lung J Acute Crit Care. 2015;44(6):494-511.
9. Sparacino PSA, Tong EM, Messias DKH, Foote D, Chesla CA, Gilliss CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Hear Lung J Acute Crit Care. 1997;26(3):187-195.
10. Ross A, Thomas S. The health benefits of yoga and exercise: a review of comparison studies. J Altern Complement Med. 2010;16(1):3-12.
11. Lazaridou A, Philbrook P, Tzika AA. Yoga and mindfulness as therapeutic interventions for stroke rehabilitation: a systematic review. Evidence-Based Complement Altern Med. 2013;2013.
12. Younge JO, Gotink RA, Baena CP, Roos-Hesselink JW, Hunink MGM. Mind--body practices for patients with cardiac disease: a systematic review and meta-analysis. Eur J Prev Cardiol. 2015;22(11):1385-1398.
13. Bruce E, Lilja C, Sundin K. Mothers’ lived experiences of support when living with young children with congenital heart defects. J Spec Pediatr Nurs. 2014;19(1):54.
14. Donofrio MT, Massaro AN. Impact of congenital heart disease on brain development and neurodevelopmental outcome. Int J Pediatr. 2010;2010.
15. Miatton M, De Wolf D, François K, Thiery E, Vingerhoets G. Neuropsychological performance in school-aged children with surgically corrected congenital heart disease. J Pediatr. 2007;151(1):73-78.
16. Gerstle M, Beebe DW, Drotar D, Cassedy A, Marino BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr. 2016;173:154-159.
17. Pinho N, Castro CF, António CC, Bettencourt N, Sousa LC, Pinto SIS. Correlation between geometric parameters of the left coronary artery and hemodynamic descriptors of atherosclerosis: FSI and statistical study. Med Biol Eng Comput. 2019;57(3):715-729.
18. Susin FM, Tarzia V, Bottio T, Pengo V, Bagno A, Gerosa G. In-vitro detection of thrombotic formation on bileaflet mechanical heart valves. J Hear Valve Dis. 2011;20(4):378-386.
19. Bongert M, Geller M, Pennekamp W, Nicolas V. Simulation of personalised haemodynamics by various mounting positions of a prosthetic valve using computational fluid dynamics. Biomed Eng Tech. 2019;64(2):147-156.
20. Toninato R, Fadda G, Susin FM. A Red Blood Cell Model to Estimate the Hemolysis Fingerprint of Cardiovascular Devices. Artif Organs. 2018;42(1):58-67.
21. de Jaegere P, Rocatello G, Prendergast BD, de Backer O, Van Mieghem NM, Rajani R. Patient-specific computer simulation for trans-catheter cardiac interventions: what a clinician needs to know. Heart. 2019;105(Suppl 2):s21--s27.
22. Comunale G, Padalino M, Stellin G, Burriesci G, Peruzzo P, Susin FM. Physiology of single ventricle circulation: basic hydraulics explains basic complications. In: 7th International Conference on Computational Bioengineering, Compiégne, France; 2017.
23. Pennati G, Corsini C, Hsia T-Y, Migliavacca F. Computational fluid dynamics models and congenital heart diseases. Front Pediatr. 2013;1:4.
24. Bramlet M, Olivieri L, Farooqi K, Ripley B, Coakley M. Impact of three-dimensional printing on the study and treatment of congenital heart disease. Circ Res. 2017;120(6):904-907.

Most read articles by the same author(s)

Obs.: This plugin requires at least one statistics/report plugin to be enabled. If your statistics plugins provide more than one metric then please also select a main metric on the admin's site settings page and/or on the journal manager's settings pages.