Many factors determine the impact of congenital heart disease on the patients’ life course : first of all there is a great variety of defects, some differing only slightly from the normal, while others represent the late results of surgical interventions, some with late and perhaps progressive complications. These will be affected by the greatly varying socio-economic circumstances and differences in the support received from their families, friends and the medical establishment as well as by the patient’s educational and community support.

The experience of painful diagnostic and surgical procedures as well as exclusion from peer activities can have a lasting effect on many young patients and may extend their concerns into adulthood. Studies of young adults have indicated a great need for supportive vocational development and every effort to maximize their life potential in all possible ways. Regrettably, most patients and their families were unaware of the outstanding support programs mandated in national legislation for persons with disabilities. Consequently these extensive legislated resources were seldom utilized by young adults with congenital heart disease.

It was apparent that the quality of life of young adults with congenital heart disease was greatly dependent on the support received in their earlier years. It is clear then that counselling and social services support must be provided through the medical teams who should follow up each individual in a comprehensive manner, including the access to societal benefits.