We are GUCHs, Grown-Ups with Congenital Heart defects. Teenagers and grown-ups with congenital heart defects are a group of patients which is fast-growing in numbers due to advances in cardiac surgery and intensive care in the last forty years.
Approximately one child out of 100 (1%) is born with a congenital heart defect; 75% have simple defects and do not need long-term treatment; 25% however suffer from a complex congenital heart anomaly which requires special medication or surgery.
In the past, many people affected by a complex heart defect died early, often in infancy. Thanks to huge medical advances, up to 90% of the affected people reach adulthood even with a complex heart defect (in Switzerland yearly about 500 people).
Approximately 25'000 adults with congenital heart defects live in Switzerland today, with an increasing trend. Most of them have had cardiac surgery when they were young. They are repaired, but not yet healed.
Complex heart defects often need several surgeries as a child, teenager or adult. Scars on the heart, artificial limbs and implants, as well as cardiac pacemaker require lifetime follow-up care.
Grown-ups with congenital heart defects often face special problems in their job or private life and need competent help and advice. GUCH-doctors and specialists start to arise and in some countries specialised GUCH-programmes have already been established. However, we still have a way to go!