The Hope and Courage Podcast for CHD Parents

In this episode we talk to the incredibly inspiring CHD adult and author of From the Sidelines to the Finish Line: A Chronic Illness Survivor’s Challenges and Everyday Triumphs Emily Falcon! She has an amazing story of overcoming struggle and achieving what she never dreamed she could. We discuss her Benjamin Button-like life story and how she learned to make the most of every opportunity she was...

In this episode we talk to CHD adult and creator of The Heart Dialogues Leigh Kamping-Carder! She is a journalist located in New York with a master's in journalism from NYU and runs the newsletters team at a big media outlet. You will hear her thought-provoking perspective on the part CHD plays in a person's identity, and how the presence of it affects all parts of their life. We discuss t...

In this episode we talk to CHD parent Grace Harvey! She & her husband live in Michigan where they both work full-time jobs as they try to navigate their family's CHD journey. Grace shares her story about how they make their heart warrior's health, family, careers, relationships, and mental health all priorities along the way. She has some great insights on authenticity and empathy in h...

*TRIGGER WARNING* This episode contains discussion about child loss.  In this episode we talk to CHD parents and James Doss Memorial Foundation owners Carlee & Randy Doss! Five years ago they lost their son James to congenital heart disease and today they talk to us about their grieving process since it happened. We discuss how communication was key to sustaining their marriage during that dif...

In this episode we talk to heart dad and author of the books Steal the Reaper & Hunt the Reaper Todd Hosea! Todd has been a heart dad since 1999 and has so much wisdom to share on taking care of your relationships, letting go of normalcy, and pursuing your dreams on the CHD journey. He also encourages CHD parents that they are capable of so much more than they can imagine. Todd is so inspiring...

In this episode we talk to heart warrior & psychotherapist Tracy Livecchi, LCSW ! Tracy shares about her new book Healing Hearts and Minds: A Holistic Approach to Coping Will with Congenital Heart Disease that she co-authored with Dr. Liza Morton. The focus of their book is mental health challenges in the CHD community and it gives tangible solutions for each of those challenges that may arise...

In this episode we talk to heart mom & The Love for Littles shop owner Josie Hau! Josie shares the incredible story of her heart warrior Maya, who also has Down Syndrome, and how Josie coped with the difficulties by searching for certainty and magic on her family's CHD journey. She also discusses how her family made the decision to have more children after Maya and what helped her in the d...

In this episode we talk to heart warrior Faith Brackett! This incredible young woman has accomplished so much in her life thus far, from winning Ultimate International Miss Maine to starting her own foundation called CHD Tablet Talk to help keep children with CHD connected and engaged while experiencing lengthy hospital stays. We introduce you to her family's motto "Do it but do it differ...

In this episode we chat with Heart Mom & Pediatric Cardiology Echo Tech Brittany Freese. We discuss her unique position as a heart parent & a medical profession in the cardiology world, and what kind of perspective that gives her on her family's CHD journey. She encourages us & other CHD parents to enjoy the moment we're in with our heart warriors and to not let the past or future hind...

In this episode we chat with Heart Warrior Letitia Aloysius! She is 21 years old and is wise beyond her years. You will learn so much from her about how to talk to young heart warriors about their CHD, and how to make sure they know that they are MORE than their CHD. We loved learning about what her day to day looks like as a young adult heart warrior & more about who she is!  Our book Ho...

In this episode we chat with heart warrior, author, & publisher Amy M. Le. Amy is a Vietnam War survivor and has an incredible story to share about her mother Snow and the great distance she went to get Amy the care she needed for her heart. Snow is an inspiring example of what lengths a CHD parent will go to to fight for the life of their heart warrior, and how to plug into community to get help....

In this episode we had the honor of talking to Tom Dahlborg, and expert & leader in the world of healthcare. He is the President and CEO of the Dahlborg HealthCARING Leadership Group with 40 years of experience in positioning leaders (in healthcare and beyond) to engage heart and mind in all they do, to embrace and embody compassion, care and love, while leveraging science and evidence, to hon...

In this episode we have a great conversation with CHD Parent & author Debi Lewis. Her book is called Kitchen Medicine: How I Fed My Daughter out of Failure to Thrive . You can buy it HERE ! In our chat with Debi you will hear about her heart warrior Sammy, and Debi's challenge to feed her in the midst of her CHD diagnosis. It took seven years of advocating and problem solving to figure out the...

In this episode we have a great conversation with CHD Parent Susan May. She is an amazing CHD advocate and the author of several books. The book about her & her family's experience with her Heart Warrior Nick is entitled Nick's New Heart: 30 Years and Counting . You can buy it HERE ! In our chat with Susan you will hear about her book, and also her incredible wisdom on how to live well in the...

In this episode we talk to heart warrior Lisa Colvil, who has an inspiring story and is passionate about inspiring others in the CHD community! A fascinating aspect of this episode is our discussion on how Lisa's Vietnamese culture affected her experience growing up with CHD. She also shares about her role as a mom to her two kids and how CHD influences her parenting. She just released a new book...

Meet CHD Parents Matt & Lauren Backe! You may have heard their names recently from their photo of Matt’s scar tattoo that went viral, but did you also know that they are incredible CHD advocates and that their children Jack and Everly(HW) wrote a book together?! In this episode we commiserate on raising CHD siblings and discuss their personality traits that they may have attained due to having a h...

In this episode we talk about family's journey through Harding's Norwood open heart surgery. We cover everything from the sweet moments before surgery, controlling what we could during surgery, and the surprise turn Harding threw at us during recovery. It was not an easy road, but we learned so much from it, and we hope that you get some takeaways for your CHD journey from our story.  Download a F...

In this episode we had the pleasure of talking to CHD Parent Jenny Muscatell. Jenny is an author, CHD advocate, and co-founder of The Heart Community Collection. We learn about her adult heart warrior Faith, and what it was like for Jenny for her daughter to be on the forefront of receiving surgeries that are now common practice today. Jenny shares about her faith carrying her through the CHD Pare...

In this episode we talk to CHD Parent & Film Writer/Producer Michael Katchman. We discuss his incredible new documentary entitled "Building the Field: Lifelong Care for CHD" and how important it is that children who have CHD and have received open heart surgeries don't get lost to care. Did you know that 90% of adults with CHD do not receive regular medical care for their CHD?! 90%! The medica...

*TRIGGER WARNING* This episode contains discussion about child loss.  In this episode we have a beautiful conversation with our friends Kayla & Kevin Warnick about their heart warrior Jacob. If you, or someone you know, has suffered the loss of a child, there is much hope, wisdom, and encouragement to be gained from their story. We discuss their journey through diagnosis, birth, life, and...

Join us for a deep dive into the Supporter & Researcher profiles from our CHD Parent Profile Assessment! We talk about what makes these unique CHD Parents so great, what skills they bring to the table, and where there is room for growth. We built the CHD Parent Profile Assessment to provide a personalized resource to help you better understand and navigate your unique experience. *Disclaimer:...

Join us for a deep dive into the Commander & Performer profiles from our CHD Parent Profile Assessment! We talk about what makes these unique CHD Parents so great, what skills they bring to the table, and where there is room for growth. In the next episode we will talk about the Supporter & Researcher CHD Parent profiles. We built the CHD Parent Profile Assessment to provide a personalized...

In this episode, we introduce our new free CHD Parent resource, the CHD Parent Profile Assessment ! Just as every CHD child is different, so every CHD Parent is unique in how they experience and process the trials CHD brings. Having a child with CHD can be a very isolating experience, and when we experience it differently than our partner or other CHD Parents, it can increase the feeling of loneli...

In this episode, we talk to CHD Parent Anna Jaworski. Anna is an amazing woman! She's a CHD advocate, author, publisher, podcast host, speaker, and co-founder of The Heart Community Collection . In Part 2 of our chat with her, we talk more about her son, CHD Warrior Alex, and his journey. We hear about what Anna thinks every CHD Parent should now, such as enjoying your pregnancy. We also hear abou...

In this episode, we talk to CHD Parent Anna Jaworski. Anna is an amazing woman! She's a CHD advocate, author, publisher, podcast host, speaker, and co-founder of The Heart Community Collection . In Part 1 of our chat with her, we talk about her son, CHD Warrior Alex, and the amazing man he's become. We also talk about the difficulty Anna had with getting a correct diagnosis for Alex as a baby when...