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

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LATEST NEWS

Hope for HIE is excited to announce the addition of Vanessa Zinke, LCSW, to the organization, a seasoned neonatal/perinatal social worker. In her role, Vanessa will work to further build out Hope for HIE’s support network leading weekly online video support calls, lead and launch Hope for HIE’s new peer support mentorship program for newly diagnosed families and those new […]

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This day ten years ago was not a good day. At some point in the wee hours of that morning, about eight hours after Kohl was born, we were abruptly awoken by the resident on call. She had the misfortune to inform us that Kohl started having seizures, had to be intubated and would need to be transported to our […]

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Katie Taylor, CEO of Child Life On Call & Podcast, highlighted the HIE parent experience in a recent interview with Betsy Pilon, Executive Director. You can listen below, or where you listen to your favorite podcast:

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We are excited to share the 2021 Hope for HIE Impact Report: Interactive Document: Printable PDF:

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The holidays are one of the toughest times of the year for our families. Expectations of what life was “supposed” to be like, in the thick of cold and flu season, and the last couple of years… a global pandemic. Since 2016, Hope for HIE has given away over $10,000 per year in items that improve the quality of life […]

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Sleep issues are very common with HIE (hypoxic ischemic encephalopathy), and across all outcomes. Sleep interruptions with HIE have a link to the sleep/wake cycle. We recently sat down with Dr. Chris Carosella, double-boarded Pediatric Neurologist & Sleep Medicine specialist, and Hope for HIE Medical Advisory Board member, to discuss sleep issues in children with HIE and other neurological conditions. […]

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If your child has experienced seizures, even if they are under control, or you had resolved neonatal seizures, a Seizure Action Plan is an important tool for anyone in your child’s life to be aware of. Seizure Action Plans outline what to do in case of a seizure for your child. This could include when to call 911, a bit […]

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Epilepsy truly embodies a “trial and error” approach sometimes. Certain types of seizure disorders and seizure types are more responsive to specific medications than others. Epilepsy in HIE is pretty common, and HIE is a leading cause of some specific types of epilepsy and seizure disorders. Why are seizure problematic? Sometimes they can inhibit development, learning, and focus. Sometimes they […]

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A PICU Journey with HIE – by Amy Bannister DiGiacomo Expectant parents say this all the time. I probably said it too, until my second child, Oliver, was born. Now the phrase hits me in the chest when I hear it. Oliver’s birth was fine until it wasn’t. When he was four days old, he stopped breathing in my arms […]

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IT’S THAT TIME OF THE YEAR AGAIN! We’ve got ALL SORTS of amazing Hope for the Holidays things planned. We’ve got some AMAZING giveaways planned for our sixth annual Hope for the Holidays 10 Days of Giveaways in December that we’ll run again December 6-15 in our Parent Hub on Facebook, giving away over $10,000 of adaptive equipment, things to make […]

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UPCOMING EVENTS

Hope Goes LIVE! with Vanessa Zinke, LCSW - January 26 @ 3:00 pm - January 26 @ 3:30 pm

Meet Vanessa Zinke, LCSW, Hope for HIE’s newly appointed social worker, and learn more about Hope for HIE’s commitment to building out support programs, such as weekly video support groups, a comprehensive peer support mentor program for newly diagnosed and new to loss families, and her experience as a NICU social worker. This event takes place LIVE! on Hope for […]

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Video Support Group for Newly Diagnosed Families - February 3 @ 8:00 pm - February 3 @ 9:00 pm

VIDEO SUPPORT GROUP STARTING FOR NEWLY DIAGNOSED FAMILIES (those within the first year of diagnosis) Parents and legal guardians of HIE children within their first year of diagnosis are invited to participate in our monthly Newly Diagnosed support video call. Led by Hope for HIE’s social worker, Vanessa, families will be engaged in a space of healing and hope, no […]

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Video Support Group for Loss Families - February 10 @ 8:00 pm - February 10 @ 9:00 pm

VIDEO SUPPORT GROUP STARTING FOR LOSS FAMILIES (those who have lost their children due to HIE) Parents and legal guardians who have lost their children due to HIE, either at birth or in childhood, are invited to participate in our monthly support group. Led by Hope for HIE’s social worker, Vanessa, families will be engaged in a space of support, […]

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WELCOME

We are the worldwide voice of families who have children with Hypoxic Ischemic Encephalopathy

We’re the largest collective of HIE help, support, resources, and families in the world, with an incredibly active and engaged community. Hope for HIE is deeply committed to providing comprehensive, personalized support for each family’s journey.

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RESOURCES

We have been scared. We have felt alone. We have felt overwhelmed. Our mission is to improve the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy through awareness, education and support.

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RESEARCH
INQUIRIES

Every day, we work relentlessly to partner with researchers who are working to decrease the incidence of HIE, and improve the quality of life for babies and children who face it. If you are a researcher and would like to partner with our community of over 7,000 families, reach out.

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Hope for HIE’s Board of Directors, Medical Advisory Board, Council of Advisors, and volunteers can provide in-depth professional insight and storytelling on a variety of topics.

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