Stories

During the course of the Corage project, the Design Institute for Health team conducted more than 40 interviews with patients, their families, their significant others, and with clinical providers. We tried to cover as many different situations as possible, from parents of young babies struggling to juggle all the challenges of single ventricle CHD to older adults with a lifetime of experience living with congenital heart disease. Among the providers we included cardiologists, surgeons, nurses, social workers, psychologists, physical therapists and even the Ronald McDonald House. 

Our methodology relies on contextual interviews. We like to meet people in context, either at their home or another familiar place, and try to understand their lives not only from a clinical point of view, but also how their condition affects their daily lives, school, work, social interactions. In other words, we tried to immerse ourselves in their lives. We counted on being able to do that for our exploration of congenital heart disease.

The coronavirus thwarted some of our plans. We had barely started our research with providers when in-person interactions were no longer allowed. We had to quickly adapt to the new circumstance and change to online interviews. We still heard many amazing stories learned about some of the things that parents and patients of all ages have in common, but we missed some of the every day “context” that in-person interviews would have provided.

In a brief period of time our team got to experience a taste of the emotional roller coaster — many people we interviewed used that word — that congenital heart disease is. People shared with us the fear of the diagnosis and the joy of a new baby, their illnesses and recoveries, their challenges dealing with aspects of life that most of us take for granted and, especially, their belief in medicine and their hopes for the future. 

It would be impossible to convey here the wealth of information we obtained from these conversations. We thought we should give you a sample by capturing quotes about key moments. Names and bios have been changed, and words edited for grammar and concision. Other than that, they represent the true voice of the participants. 

Please click through the links below to hear some of their stories: