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With over 5,000 families calling Hope for HIE home around the world, across all outcomes, our support network and information sharing is the largest collection of parent and family voices with neonatal and pediatric acquired hypoxic ischemic encephalopathy. While there is a lot of research that focuses on moderate and severe HIE, outcome tracking data continues to be lacking and our community actually is an incredible repository for tracking outcomes. With mild HIE, many families have come across the “brush off” for long term outcomes.
More researchers are finding that for those families they have continued to follow in a more mild HIE category, long term outcomes previously thought to come away unaffected, actually see nuances of differences in child development further down the road outside of gross motor deficits.
We see this throughout the Hope for HIE closed parent network.
Many families who were once signed off on by neurology or developmental clinics at age 2, come back to our network with learning and attention difficulties, behavioral challenges, diagnosed on the autism spectrum, and a return of seizures with many receiving an epilepsy diagnosis.
Hope for HIE is charging forward with a focus on partnering with more researchers and exploring how we can utilize the incredible information share we have had for over eight years, to better understand the scope of HIE, work with those who share medical information with patients to provide a more accurate conversation of what may or may not happen, and advocate for expanded developmental follow ups.
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