CNOC Talk: A podcast of the Cardiac Neurodevelopmental Outcome Collaborative.

What does it mean to be a parent when your baby lives in the cardiac ICU? Host Karli Negrin sits down with Dr.Amy Jo Lisanti, a nurse scientist at the University of Pennsylvania School of Nursing and Children's Hospital ofPhiladelphia; Dr. Samantha Butler, a developmental and clinical psychologist at Boston Children's Hospital andHarvard Medical School; and Jackie Hay, a lead family partner at St. Louis Children's Hospital and a parent of a child born with CHD, for a conversation about developmental care and parent engagement in the cardiac intensive care unit.

The panel digs into what developmental care actually looks like at the bedside, why "empowering" parents may be the wrong frame, how the language care teams use shapes a family's experience, the geographic and financial barriers that keep parents away from the bedside, how teams learn to safely support holding a baby on lines and tubes, and what it takes to change hospital culture, from policies and procedures to how rounds are run.

Recorded for CNOC Talk, the podcast of the Cardiac Neurodevelopmental Outcomes Collaborative

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.

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.

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): "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/

Facebook: https://www.facebook.com/OpenHeartsCamp

Website: https://www.openheartscamp.org/

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.

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.

CNOC Talk is a podcast of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC). CNOC Talk is for patients, parents, and professionals to discuss all aspects related to cardiac neurodevelopment across the lifespan. We hope this podcast provides education and inspiration as we all work towards improving the quality of life for pediatric heart patients. 

On the inaugural episode, Dr. Caroline Lee and Karli Negrin talk with several of the current leaders of CNOC - Dr. Shab Peyvandi (Co-Chair), Dr. Kelly Wolfe (Co-Chair), and Dr. Sarah Kelly (Secretary). Take 25 minutes to learn about the history of the organization and the energy behind the great work on-going!

About the hosts: 

Caroline Lee, MD is a Pediatric and Fetal Cardiologist at Washington University and St. Louis Children's Hospital. She is the Director of the Cardiac Neurodevelopmental Program at St. Louis Children's Hospital. Karli Negrin, MS, CCC, SLP is a Speech Language Pathologist at Nemours Children's Health in Wilmington, Delaware. She is Co-Chair of the Communications Committee of CNOC.

About CNOC:

Our Vision

The Vision of the Cardiac Neurodevelopmental Outcome Collaborative is to be a multicenter, multinational, multidisciplinary inclusive group of healthcare professionals committed to working together and partnering with families to optimize neurodevelopmental outcomes for individuals with pediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximize quality of life for every individual across the lifespan.

Our Mission:

The Mission of the Cardiac Neurodevelopmental Outcome Collaborative is to determine and implement best practices of neurodevelopmental services for every individual with pediatric and congenital heart disease and their families through clinical, quality improvement, and research initiatives.