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

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 author, who is mother of a 14 years old boy born with a severe heart defect. Key points on CHD-life management as experienced by the author and her son and family in the past fourteen years areproposed and discussed following a „from inside‟ perspective. Suggestions aimed at soliciting the design and delivery of ad-hoc support programs is also given. The importance of a multidisciplinary, global approach capable of joining all the scientific, professional and socio-political parts is highlighted.