We are parents of a child with a severe congenital heart defect (tricuspid atresia, hypoplastic right heart syndrome) who has now had three palliative open heart surgeries (5 days, 6 months, 18 months). We are greatly interested in learning more about research following children and adults who have such congenital heart defects as well as understanding the potential causes of these conditions. This blog will detail our readings and interpretations of recent primary scientific literature discussing congenital heart defects. Unfortunately much of the scientific literature on congenital heart defects is not accessible to the general public because it is behind a paywall. This blog will discuss new research about congenital heart defects and try to describe their results and significance in general layperson terms. Describing these results in layperson terms is important to us so that we remember what these terms or concepts mean down the road.
Please note that our opinions and views on these studies are our own and we have no formal medical training so please view this blog simply as an open journal that contains our interpretations of these studies.
This blog isn’t about giving advice, providing malicious information that disrupts patient-doctor relationships, comparing treatments among patients, etc. Obviously each patient and the treatment for each patient is different and we don’t use our experiences as a benchmark for comparison.
This blog is also not about being pessimistic about the future of patients with congenital heart defects. We are optimistic but also like to be informed about the costs and benefits of different medical approaches.
Our Personal Experience with Congenital Heart Defects in Pictures
First open heart surgery (band on pulmonary artery) at 5 days old
Second Open Heart Surgery (“hemi-Fontan”) at 6 months old
Third Open Heart Surgery (Intra-cardiac or Lateral Tunnel Fontan) at 18 months
Today after the heart surgeries