Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245)

"I remember sitting in the NICU thinking, ‘Am I going to lose my baby? Is this the best outcome for him? What will his life look like?’ And then I realized—I wasn’t alone in these thoughts. Other parents had been here before, and they found a way forward. That’s when I knew we needed a community like Hope for HIE." — Betsy Pilon, Founder Hope for HIE

We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.

What happens when your child’s birth doesn’t go as planned, and you're suddenly navigating a diagnosis you never expected? For Betsy, the experience of welcoming her son Max was a crash course in resilience, advocacy, and finding a community that changed everything.

In this heartfelt episode, we explore:

 

✅ What HIE (Hypoxic Ischemic Encephalopathy) is and how it affects newborns

 

 

✅ The emotional rollercoaster of an unexpected NICU stay

 

 

✅ How Betsy became involved with Hope for HIE and transformed it into a global support network

 

 

✅ The power of peer support, self-advocacy, and the importance of access to resources

 

 

Whether you're a NICU parent, healthcare professional, or simply looking for an inspiring story of perseverance, this episode is for you.

📢 This Episode is a Repost!

We’re bringing back this powerful conversation with Betsy from Hope for HIE—an episode that resonated deeply with so many listeners. Whether you’re hearing it for the first time or revisiting her inspiring journey, this story of resilience, advocacy, and community is one that never loses its impact.

Timestamps & Key Topics

⏱️ [00:00] – Episode Intro

Welcome to today’s episode featuring Betsy and her journey with Hope for HIE

 

⏱️ [01:00] – Meet Betsy

How her son Max’s unexpected birth led to a life-changing mission

Her background in healthcare communications and how it shaped her advocacy

 

⏱️ [03:00] – The Start of an HIE Journey

Betsy’s pregnancy, the first signs of concern, and an unexpected emergency C-section

The overwhelming first hours and days in the NICU

 

⏱️ [09:00] – Understanding HIE & Cooling Therapy

What cooling treatment is and how it helps babies with HIE

The difficult reality of not being able to hold or interact with your baby immediately

 

⏱️ [13:00] – The Emotional Impact of NICU Life

Coping with uncertainty and the rollercoaster of NICU ups and downs

How self-advocacy played a role in making decisions for Max’s care

 

⏱️ [24:00] – Finding Hope for HIE

How a Google search connected Betsy with a community of families navigating the same diagnosis

The power of peer support in the rare disease and medical parenting world

 

⏱️ [30:00] – From Personal Experience to Advocacy

Turning lived experience into action by growing Hope for HIE into a thriving nonprofit

How Hope for HIE provides resources, education, and community for families worldwide

 

⏱️ [38:00] – Life After the NICU: Max’s Journey Today

Max’s growth, resilience, and the realities of life after an HIE diagnosis

Balancing family life, advocacy, and raising awareness

⏱️ [44:00] – Advice for NICU & HIE Families

What Betsy wishes she had known during those first days and weeks

The importance of connection, education, and taking things one step at a time

 

⏱️ [50:00] – How to Connect with Hope for HIE

Where to find support, resources, and get involved

 

The mission to ensure no parent faces HIE alone

 

Resources & Links

📌 Learn More About HIE & Hope for HIE: www.hopeforhie.org
📥 Request Support Materials for NICUs & Families: Hope for HIE Resources
📲 Follow Hope for HIE on Instagram: @HopeForHIE
🎧 Listen to more episodes: Child Life On Call

Share Your Thoughts!

Did this episode resonate with you? Do you have an HIE or NICU experience to share? We’d love to hear from you! Leave a comment below or tag us on social media.

🎙️ Subscribe & Review: If you found this episode helpful, please subscribe and leave a review—it helps more families discover these stories and resources.

❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link.

🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

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linkedin.com/in/kfdonovan

 

The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

Keywords:  HIE (Hypoxic Ischemic Encephalopathy), NICU, Advocacy, Parent Support, Child Life Specialist