Navigating PVS
Navigating PVS
Podcast Description
Pediatric Pulmonary Vein Stenosis (PVS) is a devastating rare disease. Classified as a congenital heart disease, it affects the entire cardiovascular system and is generally most aggressive in early life.
The road taken by parents is often filled with complications, worry, fear, trauma, endless decisions, fatigue, frustration, the search for answers. And yet, hope. Joy. An appreciation for the little things. Deep gratitude. Faith. Resilience. Strength beyond imagination.
In this podcast, we'll dive into family stories and topics relevant to PVS life.
Podcast Insights
Content Themes
Explores themes of resilience, advocacy, and the emotional journey of parenting a child with PVS, covering specific topics such as caregiving experiences, healthcare system challenges, and the power of community support with episodes like 'Careers, Caregiving & Community' detailing the balance of work and parenting for moms of PVS children, and 'Across the Pond' discussing cross-cultural experiences in managing medical care.
Pediatric Pulmonary Vein Stenosis (PVS) is rare and life-changing—but you don’t have to face it alone. Join creator and host Jen Joly, a PVS mom and advocate, as she shares real stories of resilience, hope, and community from families navigating this devastating diagnosis.
💗 This is a very emotional conversation discussing child loss. Consider having tissues handy and taking breaks as needed while listening. 💗
In this episode, Jen Joly is joined by fellow PVS mom Brenna Smith for a deeply personal and courageous conversation about losing a PVS warrior – her son, Knoxley.
Brenna shares Knoxley’s story, from a high-risk pregnancy and extreme prematurity to life in the NICU, a PVS diagnosis, and the complex medical journey that followed. Together, Jen and Brenna talk about what it means to fight for your child through unimaginable highs and lows, while also holding the reality that time may be limited.
At the heart of this episode is the experience of loss: what it looks like to say goodbye, to process grief, and to carry forward the love and legacy of a child who changed everything.
Because even in the deepest heartbreak, there is meaning, connection, and the enduring impact of a life so fiercely loved.
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