Families facing hypoxic ischemic encephalopathy often turn to internet research for information about the condition and possible treatments. This tool will help families critically analyze what they are reading and if it is applicable to their child, and worth elevating to their medical team.
When HIE enters your life, it doesn’t quietly knock.HIE comes in swinging with absent cries, unfamiliar acronyms, NICU teams moving fast.And in those first moments, hope feels simple and urgent:Let them be okay.Let this not be as serious as it sounds.Let us go home and move past this. At first, many of us define hope by outcomes.We ask what we […]
When I was a coach before having kids, I taught my students to celebrate every win. Plenty of other coaches disagreed with that approach, but it has served me well in parenting my child with HIE. There was a time I wasn’t sure we’d ever celebrate a birthday. The early days were full of numbers — blood gases, Apgars, MRIs […]
For families navigating life after a diagnosis of Hypoxic Ischemic Encephalopathy (HIE), seizure management often becomes a central focus. Epilepsy is a common outcome of HIE, and while many children respond well to treatment, seizures remain a serious medical concern—especially when poorly controlled. One of the most devastating risks associated with all epilepsies is Sudden Unexpected Death in Epilepsy, or […]
“With HIE, things go well…until they don’t.” As much as I wish I’d never heard of HIE, I’m forever grateful to have stumbled upon Hope for HIE’s parent support Facebook group one late and lonely night in 2013. 🫶 In the aftermath of Katie and Caroline’s birth I turned to Hope for HIE for peer support and information. 🫶 As […]
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