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Family reflections: what’s next for hypoxic-ischemic encephalopathy (HIE)—a patient advocacy perspective

Pediatric Research (2025)Cite this article

In 2019, I shared my family’s story in a Pediatric Research commentary, sharing our journey with HIE and the evolution of building a grassroots advocacy and support organization through Hope for HIE. And, like the evolution of advocacy for HIE since the published commentary, my personal story has shifted too.

Max is now 13 years old, and the “wait and see” continues to unfold. In the height of the pandemic, Max developed epilepsy having his first seizure during a sleepover with his sister, and rushing in an ambulance at 6 am to the local emergency department. He had not had an EEG since the NICU, and we were thrust into a new kind of fear that countless families have experienced in the HIE community. I knew this was a possibility based on the families sharing their lived experiences of epilepsy, not because of published research as current research is scant for this cohort. Not only is there a lack of research and collected data, but there’s a lack of follow up guidelines for HIE across the many severities of impact, which does not match the now published neurodevelopmental impacts of cohorts in our community like Mild HIE at school age and beyond.

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  1. Betsy Pilon, West Bloomfield, MI, USA

    Betsy Pilon

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  1. Betsy Pilon
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Correspondence to Betsy Pilon.

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Pilon, B. Family reflections: what’s next for hypoxic-ischemic encephalopathy (HIE)—a patient advocacy perspective. Pediatr Res (2025). https://doi.org/10.1038/s41390-025-04506-y

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