Episode 55: Living with Hypoplastic Left Heart Syndrome
Guest: Kasie Marek, Heart Mom & 2-time Cancer Survivor
As we celebrate American Heart Month, heart mama and two-time cancer survivor, Kasie Marek, speaks openly and honestly about what it’s like to have a son with HLHS. We have a beautiful discussion about the realities of caring for a child with a serious and rare heart condition.
In this episode, we chat about:
- What is Hypoplastic Left Heart Syndrome (HLHS)?
- How does HLHS affect a family: emotionally, logistically and financially?
- What are the treatment options available for HLHS?
- What are the effects of a heart transplant on a family?
- What’s the best advice for a fellow heart mama?
Kasie Marek is a medical mom trying to figure it all out, one day at a time. A two-time childhood cancer survivor who entered the “nurse” mom world after her first-born, Noah, was born with Hypoplastic Left Heart Syndrome (HLHS). Now, she’s trying to navigate the everyday life of medical to-do lists, while still being a MOM, WIFE, and prioritizing self-care.
Connect with Kasie:
Facebook: Kasie Helpz Kids
Websites: laughingafterlemons.com and khkidz.org
The NICU is hard. We’re here to help.
Hand to Hold is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby’s NICU stay. NICU support is available at no cost to NICU parents in English and Spanish.
Connect with Hand to Hold:
Learn more or get support at handtohold.org.
Follow Hand to Hold on social media:
Hand to Hold's podcasts are produced by Hand to Hold, which is solely responsible for content.
Support Our Podcasts!
Donate now to ensure families continue to receive family-friendly support through the NICU Now Podcast! If you are interested in sponsoring an episode, please contact Sarah Inbau.