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What’s Next for HIE? A Newly Published Patient Advocacy Perspective

November 17th, 2025  | Advocacy  | News

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In 2019, Hope for HIE’s executive director, Betsy Pilon, published a family reflection in Pediatric Research that helped spark a broader conversation about what families navigating hypoxic-ischemic encephalopathy (HIE) need from their medical teams, researchers, and the systems meant to support them. It elevated long-standing concerns about diagnostic clarity, communication, long-term follow-up, and the disconnect between clinical outcomes and what families actually experience once they leave the NICU.

Today, that conversation continues with the release of a newly published family reflection—an updated and expanded look at where we stand in 2025, and what must come next to ensure no family faces HIE alone.

Looking Honestly at the Gaps That Remain

While advancements in neonatal care have saved countless lives, many of the challenges raised in the 2019 reflection persist. Families continue to report:

• Limited diagnostic clarity during the most overwhelming moments of crisis
• Inconsistent communication between teams and across care transitions
• A lack of long-term, standardized outcome data, leaving families without clear expectations or guidance
• Continued exclusion of mild HIE from research, despite growing recognition of its impact
• Outcome measures that don’t reflect lived reality, especially around quality of life and family experience

These gaps do more than create confusion, they shape the entire trajectory of a family’s journey, parental perception, coping, and adjusting --from early intervention and school supports to long-term care planning.

A Vision for the Next Decade of HIE Progress

The newly published reflection pushes the field to move past acknowledgment and toward coordinated action. It outlines a clear, community-driven roadmap that centers the needs, voices, and expertise of families. Key priorities include:

• Strengthening long-term follow-up to reflect the full spectrum of outcomes
• Developing standardized, meaningful measures that matter to both families and clinicians
• Expanding inclusion criteria so mild HIE is no longer overlooked
• Improving communication and supporting health literacy, especially at discharge
• Combating misinformation with evidence-based resources families can trust
• Building infrastructure and partnerships that ensure equitable, family-centered care across institutions
• Decreasing the incidence of HIE by investing in research for the many causes of HIE, and improving those that are deemed preventable.

This work cannot be done in silos. It requires clinicians, researchers, advocacy organizations, and families collaborating as equal partners—something Hope for HIE has championed for more than a decade.

Why This Reflection Matters

Family and patient perspectives have always been central to understanding the true spectrum of HIE outcomes. They bring the nuance, context, and day-to-day realities that clinical measures alone cannot capture. By continuing the work started in 2019, this updated reflection reinforces the critical role families play in shaping future research priorities, improving communication, and ensuring that care aligns with what matters most.

Read the Full Reflection & Previous Publications

📄 "Family Reflections: What’s next for Hypoxic-Ischemic Encephalopathy (HIE)—A Patient Advocacy Perspective” by Betsy Pilon, on behalf of Hope for HIE
Published in Pediatric Research, November 2025

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📄 "Family Reflections: Hope for HIE” by Betsy Pilon, on behalf of Hope for HIE
Published in Pediatric Research, June 2019

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📄 "Family Reflections on HIE” by Nick Burton, on behalf of Hope for HIE
Published in Pediatric Research, October 2018

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