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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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Healthcare Equity & Access Statement

Healthcare Equity & Access Statement

June 27th, 2022  | Advocacy  | News

As a global patient advocacy organization working to improve the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy, many who have lifelong disabilities, and based out of the United States, we want to share the concern many families have raised in regards to the United States Supreme Court decision to overturn the long-standing […]

Advice about EEGs from HIE Families

Advice about EEGs from HIE Families

May 2nd, 2022  | Epilepsy  | News

EEGs can be very stressful to prepare for, live with, and clean up the literal mess they cause. But, with so many families going through them with their children, we’ve assembled the best advice, and some links from other vetted medical organizations to help you out. What is an EEG and why would my child get one? EEG (Electroencephalogram) is […]

HIElights of Hope Book Launches

HIElights of Hope Book Launches

May 1st, 2022  | News

Simran Bansal, graduating senior at Duke University, spent the last year as Hope for HIE’s first intern. As a part of her senior capstone project, she interviewed over 65 families and clinicians involved in the HIE community, to put together an anthology of the Hope for HIE community. Through storytelling, Simran wanted to help families heal, give them an opportunity […]

Hope’s Story: Holding Onto Her Namesake

April 30th, 2022  | HIElights of Hope

As a single mother whose first child was born with severe HIE in the era of COVID-19, Hope has experienced firsthand the immense isolation associated with raising a medically complex child. But she has also experienced firsthand what true support looks like, whether through her mother always being there to serve as an extra set of hands or through the […]

Katie’s Story: Journeying with Jolene

April 30th, 2022  | HIElights of Hope

Katie lives in Virginia with her husband, Robbie, and her four children. Her three daughters are ten, three, and one and a half, and her son is six. Jolene, her youngest, is her HIE baby. During her pregnancy with Jolene, Katie was confident that she would be born healthy and full of life like her older three children. Everyone was […]

SHARE YOUR HIE STORY

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

Share Your Story

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