OpHeart is meant to be a much-needed tool for parents who are navigating the brave, new world of Critical Congenital Heart Defects (CCHDs), post-diagnosis. Our goal is to either provide you the information you are seeking, or tell you where you can go to find it.
There are some great resources already out there, particularly with regards to the medical and anatomical aspects of a CCHD diagnosis. However, even this information oftentimes is not communicated with an audience of parents in mind. For example, while there are great resources that describe, say, Transposition of the Great Arteries (TGA), there are no three-dimensional renderings out there that clearly illustrate how a TGA heart differs from a “normal” heart.
We want to create resources that make it easier for parents to understand their heart warriors’ diagnoses, as well as refer you to the best websites already out there, so that you don’t waste time and bandwidth searching.
Further, there is a dearth of information when it comes to everything outside of the medical aspects of a diagnosis, from insurance coverage, to referrals for the best pediatric cardiothoracic teams, to the emotional toll of confronting the heretofore unimaginable.
We hope to provide the information, support and references to fill these voids, and welcome your tips regarding resources, suggestions for improvement, and general feedback. OpHeart relies on information sharing and your involvement in order to best serve the CCHD community as a whole.
If you would like to help us realize the OpHeart Toolbox, please considering donating here.