Heart defect diagnosis – Information helps fight fear

In the 24th week of pregnancy, a prenatal diagnosis revealed that Tom suffered from a severe congenital heart defect. “We immediately started to search for further information,” recalls Tom’s mother, Stefanie Weismann. “Very soon, we realized that the diagnosis, hypoplastic left heart syndrome (HLHS), is among the severest known congenital heart defects. Without immediate intensive medical care our son would have died at birth.”

“We didn’t know what to do, and there were so many questions,” Tom’s mother says.  “How good were Tom’s chances to survive surgery? Would he have to suffer and feel a lot of pain? Did he have any chance of a normal life?” These are some of the questions that the knowledge platform Corience, now also available in German, intends to answer. Corience contains detailed explanations of different types of congenital heart defects as well as the latest research findings. The website presents interviews with experts, but also individual experiences of parents and patients. This broad range of perspectives and information makes Corience accessible to patients and their families and also addresses doctors, nurses, and medical personnel. 

Stefanie Weismann, Tom’s mother, is on the editorial staff at Corience. A doctor and journalist, she works for Corience because her own experience has taught her the importance of reliable, accessible information. Her son Tom is now five years old – a bright, vivacious child who came through three surgeries well. “Knowing that there are so many other kids out there leading a happy life despite their congenital heart defects gave me hope, even during the darkest times,” explains Stefanie Weismann. “With my work here at Corience, I want to give back some of that hope and show others that the long, hard journey can lead to something really good.”

About Corience

Corience is a knowledge platform dedicated to congenital heart defects (CoHD). Patients and relatives can access Corience for in-depth information and useful tips on how to make life with CoHD easier. Sponsored by the European Union, Corience consists of a team of ten journalists, doctors, and communications experts who continually update the website, which is currently available in English, Spanish, and German. Among the seven Corience partner organisations are the German National Register for Congenital Heart Defects and the German umbrella organisation for children with heart diseases (BVHK). 

Media contact

Wiebke Lesch
Corience
Head of Communications
Phone: +49 30 40048783
Email: lesch@corience.org