Did you know there are currently ZERO published long-term follow up guidelines for neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy? Thanks to members of our Medical Advisory Board, and leadership of the Neonatal Special Interest Group through the Child Neurology Society, we have begun the process to start the development of long-term follow-up guidelines for HIE. We had OVER 120 child […]

The Jarett Family beautifully illustrates how connection and support can lead to meaningful moments that honor every unique HIE journey. At their wedding, Amelia’s aunt and uncle chose to forgo traditional wedding favors and instead made a donation to Hope for HIE in Amelia’s honor, with Amelia serving as the flower girl. To further raise awareness, a framed display with […]

We’re continually inspired by remarkable families like the Arnall Family, who have turned their personal journey with HIE into a powerful platform for raising awareness. Not only has Braedn been deeply involved in spreading awareness about HIE within his local gym community, but he has also made a significant impact as an HIE Awareness Month Ambassador. By sharing Hope’s informational […]

2024 was another incredible year for our organization — we are celebrating TEN YEARS as a confirmed charitable organization, growing from 200 families to now over 10,000 from 100+ countries! We’ve grown in nearly every way and have even officially expanded our mission to reflect the five pillars of service we dedicate to — Awareness, Advocacy, Education, Research and Support. […]

We’re constantly inspired by incredible families, like the Niblett Family, who have turned their experience with HIE into a powerful force for advocacy and support. Not only have Romm and his family become deeply involved in the research and advocacy space in Australia, but Romm also serves as a peer support mentor, offering guidance, connection, and support to other families. […]

Understanding Blood Gases: A Guide for Parents of Babies with HIE When your baby is diagnosed with hypoxic-ischemic encephalopathy (HIE), it can feel overwhelming to navigate the medical information and terminology. One term you may hear frequently in the neonatal intensive care unit (NICU) is “blood gases.” Understanding what blood gases are and why they are important can help you […]

Hope for HIE is built by an incredible community of families who face the challenges of this journey with strength, resilience, and compassion. What’s even more inspiring is how they go beyond their own experiences to lift others up—sharing their support, connections, gifts, and stories to create a network of hope and understanding. Every family has a powerful “why” behind […]

We’re constantly inspired by the incredible families who not only navigate the challenges of their journey but also share their stories, support, and kindness to uplift others. Families like The Hartzel Family, who have relied on Hope for HIE’s Child Life programming and services to help navigate the unique challenges of their journey, show just how powerful community, connection, and […]

This year, we are incredibly grateful to the Clapsaddle Family for sponsoring the Hope for HIE Holiday Giveaway in loving memory of their daughter, Claire. Claire, who passed away in January 2023, filled the lives of everyone around her with so much joy, warmth, and light. Their heartfelt decision to give back to the community that supported their family throughout […]

Children who survive neonatal seizures, including those caused by hypoxic-ischemic encephalopathy (HIE), face a range of challenges that can impact their long-term development. This latest published study from the Neonatal Seizure Registry explored an often-overlooked aspect of patient-family reported outcomes: sleep disorders. Recognizing that sleep plays a critical role in cognitive, behavioral, and emotional well-being, the investigators aimed to determine […]