Edward J. Madden Open Hearts Camp

Adulting 101: Transition to ACHD

Transitioning from pediatric to adult congenital heart disease (CHD) care is a critical milestone that extends far beyond medical management. In this episode, host Dr. Caroline Lee, pediatric and fetal cardiologist and Director of the Cardiac Neurodevelopmental Program at Washington University and St. Louis Children's Hospital, is joined by Letitia Aloysius, a young adult living with Fontan circulation and an occupational therapist, and Dr Bruna Schneider, a lifespan neuropsychologist who works with many  adolescents and young adults in her practice. Together, they explore the challenges and opportunities that accompany the transition to adulthood. Through personal experience and clinical expertise, the guests discuss healthcare independence, self-advocacy, education, employment, relationships, mental health, and lifelong cardiac care. The conversation highlights practical strategies for helping adolescents and young adults understand their heart condition, manage healthcare responsibilities, and build confidence in adult care settings. Designed for healthcare providers, parents, caregivers, and individuals living with congenital heart disease, this episode emphasizes the importance of patient-centered communication, interdisciplinary care, mental health support, and structured transition planning. Listeners will gain valuable insights into supporting young people with CHD as they navigate adulthood and pursue meaningful, fulfilling lives.

Single-minded, a focus on neurodevelopmental outcomes and single ventricle heart disease

The American Heart Association notes that individuals with single ventricle heart disease are at high risk for neurodevelopmental challenges beginning in infancy and persisting into adolescence and adulthood. Join Dr. Caroline Lee as she hosts pediatric cardiologists Drs. Caren Goldberg and Sarah Plummer, and Learning Specialist Janelle Gutzeit from the University of Michigan Heart Center. This episode also includes a unique perspective from Dr. Taylor Houlihan, an individual with single ventricle heart disease who is also a physician in medical training at the University of Michigan.

Edward J. Madden Open Hearts Camp

Join Jennifer Angelone and Karli Negrin as they talk with Jonathan Iris-Wilbanks, Executive Director of the Edward J. Madden Open Hearts Camp. As taken from the website (https://www.openheartscamp.org/camp-info [https://www.openheartscamp.org/camp-info]): "The Edward J. Madden Open Hearts Camp supports the brave children who have undergone the rigors of open heart surgery or received a heart transplant. We connect them in an emotionally supportive, enriching, colorful, and empowering environment that helps them relate to other children, grow individually, and have a tremendous experience." Get ready to be wowed by this special place for heart patients and the history and love that goes into making it so wonderful. To learn more about the Edward J. Madden Open Hearts Camp: Instagram: https://www.instagram.com/openheartscamp/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__www.instagram.com_openheartscamp_&d=DwMFaQ&c=ZQs-KZ8oxEw0p81sqgiaRA&r=BfUCIQ6qhDeURC1Xfcg_f7Jqh4fTo74lxavrovmzMk8&m=fEw623mMuzPmmhhpfI0B9eQjeXSWfvVVA5kYE0yI-kYjPTvrpJXL_Xdtc1YclaHz&s=SRhHiWMWHxMR7HspSA3kZTAcOs9oWCJ7LeFko-mLuUY&e=] Facebook: https://www.facebook.com/OpenHeartsCamp [https://urldefense.proofpoint.com/v2/url?u=https-3A__www.facebook.com_OpenHeartsCamp&d=DwMFaQ&c=ZQs-KZ8oxEw0p81sqgiaRA&r=BfUCIQ6qhDeURC1Xfcg_f7Jqh4fTo74lxavrovmzMk8&m=fEw623mMuzPmmhhpfI0B9eQjeXSWfvVVA5kYE0yI-kYjPTvrpJXL_Xdtc1YclaHz&s=twKKfB79ibJrB6MQvKTvyRm9Rg-YUZSu3ef_vtAWZ54&e=] Website: https://www.openheartscamp.org/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__www.openheartscamp.org_&d=DwMFaQ&c=ZQs-KZ8oxEw0p81sqgiaRA&r=BfUCIQ6qhDeURC1Xfcg_f7Jqh4fTo74lxavrovmzMk8&m=fEw623mMuzPmmhhpfI0B9eQjeXSWfvVVA5kYE0yI-kYjPTvrpJXL_Xdtc1YclaHz&s=aMoYzLfxjHuq0gd3PndYxv5V3X7R0WSHGBu7qac2HAk&e=]

CNOC Talk: Neurodevelopemtnal Outcomes for individuals with Congential Heart Disease: The 2024 Update from the American Heart Association

Join hosts Dr. Caroline Lee and Karli Negrin to discuss the new 2024 American Heart Association Scientific Statement regarding Neurodevelopmental Outcomes for Individuals with Congenital Heart Disease. Our hosts are joined by 4 of the authors, Drs. Erica Sood, Jane Newburger, Amy Lisanti and Brad Marino, to discuss this important publication. This wide-ranging discussion highlights advances made since the previous scientific statement in 2012, covering updates in neuroprotection, risk stratification, evaluation, and management.

CNOC Talk: Health Equity in Cardiac Neurodevelopmental Care

Hosts Dr. Caroline Lee and Karli Negrin talk to three leaders within the CNOC Diversity and Inclusion Special Interest Group (SIG): Dr. Liz Willen, Dr. Sonia Monteiro, and Dr. Faridis Serrano Forty on the importance, and challenges, of diversity, equity, and inclusion when caring for children with congenital heart disease.