In this heartfelt episode of The CHC Podcast: Congenital Heart Conversations, hosts Anna Jaworski and Annie Ulchak, both deeply connected to the congenital heart defect community, delve into the sensitive topic of end-of-life care. Joined by expert panelists, including pre-planning specialist Rosa Hernandez, mental health professional Dr. Michael Groat, and palliative care nurse Maureen Groden, they explore misconceptions about hospice care, the psychological and emotional aspects of end-of-life discussions, and the importance of normalizing conversations about death. Personal stories, practical advice, and a focus on honest communication provide listeners with valuable insights into navigating these challenging times.

Maureen Groden's book is entitled, When a Loved One is Dying: Conversations about Care, Connection, and Coping. Available at Amazon, Bookshop, and Barnes & Noble.

Chapters:

00:00 Introduction and Episode Overview

00:17 Meet the Hosts and Co-Producer

01:04 Introducing Today's Guests

03:34 Misconceptions About Hospice Care

06:14 Psychological Perspectives on Hospice

09:32 Palliative Care for Children

17:59 Communicating with Children About Death

22:19 Balancing Emotional, Spiritual, and Physical Needs

24:30 Changing Society's Approach to Death

31:46 Navigating Uncertainty with Congenital Heart Defects

35:05 Small Acts of Kindness

35:49 Learning from Life's Experiences

36:04 Hope and Quality of Life

36:34 Acknowledging Life's Realities

37:26 Panelists' Closing Remarks

38:09 Heartwarming Stories and Resources

39:01 End of Life Care Discussion

39:50 Importance of Acceptance and Preparation

40:59 Personal Experiences with End of Life

44:34 Role of Medical Professionals

53:08 Children and End of Life Conversations

58:37 Final Thoughts and Takeaways

01:04:37 Upcoming Changes and Farewell

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

In the 10th episode of season three of The CHC Podcast: Congenital Heart Conversations, host Anna Jaworski and co-host Ayrton Beatty discuss the importance of understanding CPR and sudden cardiac arrest.

Guests Ben Weisbuch, a survivor of 135 sudden cardiac arrests and founder of the Heart Hope Foundation, and Dr. John Rogers, a cardiologist specializing in heart rhythm disorders and advocate for CPR and AED education, join them.

The episode explores Ben's astonishing survival story, the genetic discovery linked to his condition, the latest advances in prevention and treatment, and the critical role of community awareness and education in saving lives.

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In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty discuss the significance of World Heart Day for the congenital heart defect (CHD) community. Featuring inspiring interviews with Raadhiyah Matthews and Belen Blanton, founders of Brave Little Hearts South Africa and Little Star of Bethlehem, respectively, the episode explores their life's work in advocacy, support programs, and the unique challenges they face. From educational initiatives for children to critical care in resource-limited settings, tune in to learn about the global efforts to raise awareness and support for those affected by CHD.

Facebook: BraveLittleHeartsSA

https://web.facebook.com/BraveLittleHeartsSA

LinkedIn: Brave Little Hearts South Africa

https://www.linkedin.com/in/brave-little-hearts-south-africa-611b35b9/?originalSubdomain=za

YouTube: Brave Little Hearts S. A.

https://www.youtube.com/channel/UCqfb7gcR5ofGH-G7i4M1w5w

Email: [email protected]

Fundacion Estrellita de Belen: https://www.fedbhearts.org

Instagram @estrellitadbelen

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In this episode of 'The CHC Podcast Congenital Heart Conversations,' host Anna Jaworski, a heart mom to an adult with a single ventricle heart, is joined by her co-host Nicholle Bilodeau, who was born with a bicuspid aortic valve. The episode explores the unique challenges faced by individuals living with congenital heart disease (CHD) who are also married.

Two couples, Jason and Jen Crutchley, as well as Mark and Michelle DeRoo, share their stories of navigating marriage, medical uncertainties, and daily routines while dealing with CHD. They discuss how communication, mutual support, and understanding have helped them succeed as a couple. The episode also touches on the emotional and logistical aspects of living with CHD and provides strategies for maintaining intimacy and partnership during difficult times. Both couples offer insights and advice for newlyweds or couples beginning their journey together in the CHD community.

Other Episodes You May Enjoy:

Heart Stories: Triumphs and Trials of Multiple Transplants -- https://www.spreaker.com/episode/heart-stories-triumphs-and-trials-of-multiple-transplants--65819796 (featuring Jason Crutchley as a Co-Host)

Voices of Victory: Overcoming Congenital Heart Challenges -- https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010 (featuring Michelle DeRoo as a Guest)

Nurturing the Nurturers: Insights into CHD Caregiving -- https://www.spreaker.com/episode/nurturing-the-nurturers-insights-into-chd-caregiving--62573179 (featuring Mark DeRoo as a Guest)

The Pulse of Perseverance: Unveiling the Heart Transplant Experience -- https://www.spreaker.com/episode/the-pulse-of-perseverance-unveiling-the-heart-transplant-experience--59714311 (featuring Jason Crutchley as a Co-Host)

Transplantation in the CHD Community -- https://www.spreaker.com/episode/transplantation-in-the-chd-community--57464324 (featuring Jason Crutchley as a Co-Host)

Town Hall Meeting: Feeling Different -- https://www.spreaker.com/episode/town-hall-meeting-feeling-different--53698411 (featuring Jason Crutchley as a Guest)

Hosted on Acast. See acast.com/privacy for more information.

In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty tackle the complexities of living with congenital heart disease combined with other rare conditions.

Special guests Hope Simmons, Scott Salvaggio, and Julia Mayfield share their personal stories and the unique challenges they face, from hospitalizations and multiple diagnoses to self-advocacy and forming supportive communities. The episode highlights the importance of understanding your own health conditions, advocating for proper care, and finding a supportive network.

The discussion also addresses common issues like ADHD, autism, and mental health, offering practical advice for navigating these layered health challenges. Join us for an enlightening conversation that aims to bring awareness and hope to those living with multiple rare conditions.

Hosted on Acast. See acast.com/privacy for more information.

Fatherhood transforms when your child has a congenital heart defect—or when you're a heart warrior becoming a dad yourself. This powerful episode brings together fathers from across the CHD spectrum to share their journeys of strength, vulnerability, and unexpected wisdom.

Shaun Jones takes us through the harrowing early days with his son Ledger, who underwent his first open-heart surgery at just two weeks old. "I honestly feel incredibly blessed that I even get to celebrate Father's Day," he shares, describing how each milestone carries profound meaning in their household. His approach of taking "one day at a time" offers a blueprint for managing overwhelming uncertainty.

Joe Flowers provides the unique perspective of someone born with tricuspid atresia who became a father himself. Now facing heart failure at 44, he offers raw insights about emotional vulnerability: "I learned from a very early age to tough things out... and I just learned to shove that emotion down." His journey through addiction recovery has taught him the importance of allowing children to express their fears openly—something he wishes he'd experienced himself.

Frank Jaworski, father to 30-year-old Hope who was born with a single ventricle heart, shares how parenting a heart warrior reshaped his perspective: "When things happen that drive me crazy... I try to put them in perspective and say they're not in the hospital, they're not having open-heart surgery." As both a healthcare professional and a CHD dad, he emphasizes the value of understanding both the technical and emotional sides of your child's condition.

Throughout these conversations emerges a portrait of fatherhood marked by profound gratitude, unexpected strength, and the discovery that sometimes our greatest teachers are our children themselves. As Shaun poignantly observes about his son: "If my child can go through two open heart surgeries, he can do anything... I'm actually learning from him."

Listen now for insights that will transform how you think about fatherhood, resilience, and what it means to parent with your whole heart.

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In the 29th episode of The CHC Podcast, host Anna Jaworski, a heart mom to an adult with a single ventricle heart, and co-host Annie Ulchak, along with co-producers Nicholle Bilodeau and Guy Simkhay, discuss family planning choices for adults born with critical congenital heart defects (CHD). The episode features guests Amy Erhart and Meagan Houpt, both born with Hypoplastic Left Heart Syndrome (HLHS), who share their unique paths—choosing a child-free life and adopting, respectively. The conversation delves into the medical, social, and personal decisions impacting family planning, societal expectations, and the challenges and supports experienced along the way. The episode also addresses the impact of genetics, the challenges of adoption, and the emotional complexities involved in these life-altering decisions.

Hearts Unite the Globe: https://www.heartsunitetheglobe.com

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

Employment issues affect many members of the congenital heart community in unique ways that require awareness of rights, accommodations, and strategic approaches to the job market. Talent acquisition expert Nicholle Bilodeau and HR professional Sherein Miceli offer invaluable insights from both sides of the hiring desk.

• When to disclose your heart condition to employers depends on personal preference and whether accommodations will be needed
• Americans with Disabilities Act protections allow for workplace accommodations without waiting periods
• Insurance benefits should be carefully evaluated to ensure your cardiologists and specialists are covered
• CHDers bring unique strengths to the workplace including perseverance and adaptability to change
• Networking is crucial in today's job market, with 90% of interviews coming through professional connections
• Resumes should be tailored to each position and limited to two pages, focusing on relevant recent experience
• Employers legally cannot ask about medical conditions during interviews
• Interview notes can be requested within one year if you suspect discrimination
• Passion for your work can be a powerful selling point during interviews when appropriately shared

Join us next month for our episode about secondary transplants, exploring what happens when heart transplant recipients need another transplant.

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