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 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.
In this episode, host Jen Joly talks with fellow working mom Lindsay Hughes about the extraordinary journey of raising a child with Pulmonary Vein Stenosis. The conversation traces Lindsay’s path from her daughter's premature birth at just 24 weeks (and her own traumatic preeclampsia experience) through life in the NICU, ongoing medical crises, and the realities of long-term caregiving.
Together, Jen and Lindsay explore the emotional highs and lows of parenting a medically complex child—while also managing demanding careers. They discuss the importance of flexible employers, the role of state insurance, and the quiet strength it takes to juggle it all. With personal insights from both women, this episode is a powerful testament to resilience, advocacy, and the support that comes from shared experience.
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