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 […]
HIE is tricky. There is a vast spectrum of outcomes, no two injuries present that same way, and for many, you won’t know how HIE fully affects a child until they are much older because of how brains develop. For some, it will be obvious in the first few months, for others, it may take years until they reach school […]
HIE (Hypoxic Ischemic Encephalopathy) is one of the leading causes of Infantile Spasms, a rare but potentially catastrophic form of epilepsy. In 2019, Hope for HIE was invited to join the Infantile Spasms Action Network to collaborate with other patient groups, researchers and clinicians to move forward research and awareness so patient populations can be educated on what IS looks like and […]
For some of our HIE children, some type of orthotic (sometimes called a brace) may be necessary to help with development, ambulating and balance. There are a few different types of orthotics that may be considered. For some children, simply a shoe insert might be a good tool. For others, a solid or articulated (hinged) Ankle-Foot orthosis (AFO), or a short Supra-Malleolar […]
What started as a personal journey turned into a movement to help parents process their grief. Becky Kerrins wanted a way to both honor her daughter’s 69 days in the NICU and try to work through her grief over her HIE injury. She decided to take that energy and use it in a new workout: kickboxing. So for each […]
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