Candid Hearts: Conversations and CHD

In this special episode, Amy and Meagan reflect on an unforgettable milestone—the very first Adult Heart Camp. Seventeen adults living with congenital heart disease traveled from multiple states to gather for a weekend built on something many of us have searched for our entire lives: connection. While heart camps have long existed for children with CHD, this weekend was created specifically for ad...

In today’s Murmur Mill, we talk about the idea of living “normal” lives. While we’re fully aware that we have heart defects, we also know they don’t define who we are. The belief that people with CHD can’t live full, fulfilling lives is just that—a misconception. Many of us are thriving and living abundant lives. That doesn’t mean we don’t need support from time to time, but we’re not nearly as fr...

On today’s episode, we talk with Lizzie about her inspiring journey. Lizzie was born with a congenital heart defect and 22q11 deletion syndrome, which has shaped many aspects of her life beyond just her heart condition. She shares her experience navigating the Canadian healthcare system and how it has supported her throughout her life. Lizzie also tells us how she found her way to the Special Olym...

Let’s talk about cake! Not just any cake, but cakes that bring smiles to some truly incredible people. Icing Smiles is an organization that connects volunteer bakers from across the country to create special cakes for children with chronic illnesses, their siblings, and families honoring a child who has passed. Join us as Chelsea shares her story and gives us a closer look at the heart behind Icin...

Today, Mia joins us to share her incredibly unique story. Born with a congenital heart defect of her own, Mia has lived a healthy and vibrant life. When she and her husband decided to grow their family, she knew there were potential risks after  conversations with her medical team. At her 21-week fetal ultrasound, they learned that her son would also be born with a congenital heart defect. In this...

Today, we’re joined by members of Mezzion, a pharmaceutical company focused on improving outcomes for those living with single ventricle heart conditions. In our conversation with John, Margaret Sarah, and Meg, we learn more about their mission to bring hope to the CHD community through their FUEL-2 study. FUEL-2 is exploring a potential new medication called udenafil, designed to help children an...

** Trigger Warning**  Today’s conversation includes honest discussion about heart transplant and the realities that come with it. If that feels tender for you right now, please pause and come back when you’re ready. Today, we sit down with Kristin to share her powerful journey to a heart transplant. In this episode, she opens up about the early steps of the process, the overwhelming flood of infor...

Today, we speak with Project 1 in 100, an organization dedicated to uniting the entire CHD community in all its forms to advocate for awareness and meaningful change. While each founding member brings their own unique story and passion to the mission, they share one common goal — to be a voice for everyone impacted by CHD, no matter the diagnosis. Beyond raising awareness, inclusivity is at the he...

In today’s episode, Pam shares her deeply personal journey of longing to become a mother—and how that dream came true through the adoption of her son, Joshua, from Guatemala. As a first-time mom, Pam leans into her intuition when an unexpected situation arises, trusting that something isn’t quite right. That instinct leads to the discovery that Joshua has congenital heart disease, setting them on...

Today, we’re joined by Meagan’s husband, Billy; Amy’s husband, Bryan; and Steven and Janice. We wanted to create space for an honest conversation with spouses to explore what it’s like to love and build a life with someone who has congenital heart disease as an adult. From choosing a partner with CHD to navigating emotions, concerns, and hopes for the future, our guests share their perspectives op...

In today’s episode, we debunk a common myth about congenital heart disease. While many people are aware of CHD, it’s important to be clear: not all CHDs are the same. Too often, we find ourselves comparing our journeys to those of others, without taking the time to recognize that every person living with CHD has their own story, their own diagnosis, and their own unique challenges. In this candid...

Welcome to Candid Hearts: Conversations in CHD . We’re Meagan and Amy, and we’re so glad you’re here. This podcast is a space for real, honest conversations about congenital heart disease. We’ll be sharing stories not only from our own journeys, but also from other CHD patients and families who know this life firsthand. Together, we’ll talk about all aspects of CHD—the good, the hard, and everythi...

After two years of recording solo, I’ve made the decision for Diaries of a Heart Warrior to change and evolve. This choice tugged at my heartstrings in a very personal way, but deep down I knew that bringing in a co-host would allow us to create the kind of meaningful, impactful content we need. A HUGE thank you to every listener and guest who shared this journey with me over two wonderful years o...

Join me for this episode as I sit down with Dr. Ilardi, a neuropsychologist, whose journey into supporting the CHD community began unexpectedly. While she did not originally set out to work with CHD patients, a clinical rotation opened her eyes to a significant gap in care—particularly around neurodevelopmental challenges faced by these children and their families. After years within the healthcar...

Today I’m joined by Amanda as she shares her CHD journey. While childhood brought relatively few issues, things changed in her teenage years, leading to surgery and ongoing complications into adulthood. Through it all, Amanda’s positivity and outlook on life shine. In this episode, she opens up about her challenges, her resilience, and her hopes for the future—reminding us that CHD doesn’t have to...

Today I’m joined by Jul, Aaron, and Scott for a conversation about transitioning from pediatric to adult care. When you’re born with CHD, so much happens before you’re even old enough to understand it. In this episode, we share the things we wish we had known during that transition—offering insight, lessons, and hope to help others navigate their own path into adult care. If you would like to be o...

Today I’m joined by Patrick Mason for a special episode. Since we both host podcasts, we thought it would be fun to do a dual interview and share our stories together. Patrick opens up about his own journey—what led him into podcasting, his experience as a dad to a child with HLHS, and the hopes he carries for the future. https://micahmasonfoundation.org/ https://micahmasonfoundation.org/sharingth...

Growing up with CHD, there was no manual on what we could or couldn’t do—it was often trial by fire. Our parents did the best they could with the information they had, but as we step into adulthood, it’s on us to figure out how to start—or keep up—an active lifestyle. For some, that comes naturally; for others, it’s a lifelong struggle. What we all share, though, is an understanding of how importa...

Today I’m joined by Aiden, who shares his powerful CHD and transplant journey. His path toward transplant began when he was just 16, and at 18, he received his new heart. Now, nine years later, Aiden reflects on the reality that while his heart is strong, his body is facing new challenges. Join us as he opens up about his experiences, what he’s learning along the way, and how he continues moving f...

Aaron is back! Today, he opens up about his disability journey—what led him to the decision to step away from his job and begin the Social Security process. He shares the barriers he faced along the way and highlights the key things he believes others should consider when navigating this path. After a long road, he finally receives that official stamp of approval. If you would like to be on the sh...

Today, Bekah opens up about her journey of finding her footing as an adult with CHD. Learning to advocate for ourselves isn’t always easy—it takes time, growth, and confidence. For Bekah, certain life experiences have sparked a stronger drive to speak up for her needs. Now, she’s drawing from those moments and the lessons they’ve taught her to make positive changes in both her health and the way s...

To say Melanie’s story is unique would be an understatement. While having one child with CHD is already rare—about 1 in 100 births—Melanie is navigating life with two children living with congenital heart disease. The challenges are real, but she’s meeting them head-on with strength and grace. For Melanie, the key has been finding balance—giving her oldest the space to live his life with guidance,...

Today, Thirza shares her powerful story of living with CHD. Despite the challenges she’s faced, it’s clear she’s thriving. I especially love how she reflects on the impact of being part of a CHD group in her younger years—how those connections turned into lasting relationships. Inspired by that experience, she’s now continuing the mission for adults. Tune in to hear her incredible journey. Below i...

Katherine was born in 1982, and from the very beginning, her parents were filled with hope for her future. She underwent her first surgery within months of birth and received the Fontan procedure at age nine. From that point through much of her adult life, her health remained stable. However, in her 30s, she began experiencing arrhythmias—an unexpected turn that significantly altered the course of...

Today, Tessa shares her journey through pregnancy, life as a military spouse, and the transition of care in managing her CHD. She reflects on her experiences with four pregnancies, navigating the challenges of frequent relocations as part of a military family. Additionally, she opens up about her transition from pediatric to adult cardiology, emphasizing the importance of understanding your CHD ea...