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 […]
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 […]
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 […]
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 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 […]
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