ABOUT

At our 20 week ultrasound my wife and I discovered that our baby girl had a rare (1 in 10,000) and complex congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), which meant that essentially she would be born with only half of a working heart — her rare heart is the inspiration for the name of this podcast. Only four days after birth our daughter underwent her first open-heart surgery, and later had a number of other surgeries and procedures and spent the next 18 months (500+ days) in the Cardiovascular Intensive Care Unit. She was also diagnosed with a rare genetic mutation known as Kabuki Syndrome (1 in 42,000), which we later learned was at the root of her heart defect.

This experience has been both deeply personal, and also incredibly formative and inspiring for me.  It opened up a world of interests and areas of exploration that I otherwise never would have known existed.

During the time our daughter spent in the ICU we experienced the stories of many other families also touched by Congenital Heart Disease (CHD), we formed relationships with many doctors and care provides, and immersed ourselves in investigating current research around CHD. All of these things formed a desire in me to share these often profound stories, and provide resources and understanding to other families touched by CHD, and also to those who have yet to learn of this pervasive and significant health issue for children (and a growing number of adults), as well as those touched by other rare diseases.

Thank you for listening! I hope you enjoy these inspiring and profound stories.