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

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Navigating the complexities of HIE can often feel like wading through a thicket of uncertainties and questions. Families can spend a lot of time and resources to discern the root cause of the diagnosis, often amidst a tangle of information and misperceptions. It’s a journey that requires delving into the details, understanding the nuances, and working closely with medical teams […]

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HIE can cause autism at up to 44% higher incidence than neurotypical babies and children, and children with HIE who don’t have motor impacts were 6x more diagnosed than those with motor impacts. HIE is a SPECIFIC cause/etiology of autism. Others include genetic, metabolic, prematurity, structural brain anomalies, toxic shock, infection, inflammatory disease and traumatic injury, as well as environmental […]

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The HEAL Study looking at therapeutic hypothermia (cooling) and a medication called erythropoietin is one of the most recent, and most significant, clinical trials in the context of HIE research over the last decade. The results were technically “negative” – meaning erythropoietin didn’t show a clinical benefit – but the data collection and size of the cohort, 500 families strong […]

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Enrolled in a clinical trial or research study? We’re building out dedicated groups for families to connect. HIE families have a long history of participation in clinical trials in the pursuit of improving therapeutic options and care (it’s why we have cooling!) Currently, there are two trials underway that we are supporting and have set up dedicated groups for: If […]

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Our families are all too familiar with the agonizing “wait and see” game that comes with an HIE diagnosis. The uncertainty surrounding our child’s long-term impacts, outcomes, and quality of life is a harsh reality we grapple with daily. We wait for results, we wait for researchers to uncover new therapeutic interventions, and we wait for data that could offer […]

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No matter its length, whether it’s a NICU stay, PICU stay, or hospitalization, the experience is often accompanied by trauma, and our HIE families want an anchor amidst the storm. In our recent conversation with Dr. Latrice L. Dowtin, Co-Chair of the National Network of NICU Psychologists, founder and clinician at PlayfulLeigh Psyched, and Hope for HIE Medical Advisory Board […]

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Advocacy is important; there’s no doubt about it. But let’s face it: putting it into action can be hard, especially when navigating the complexities of medical care. Between emotions running high, the need to digest large amounts of not-so-easy-to-understand information, and the pressure to make quick but responsible decisions, it’s totally normal to feel overwhelmed. Plus, add in the uncertainty, […]

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April 10th is National Siblings Day, and what better day than today to recognize Hope for HIE’s Super Sibs? What’s a Super Sib, you may ask? A sibling of a brother or sister with HIE across any outcome or impact. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth with […]

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Between our phones, laptops, computers, and the myriad of other devices we use daily, it’s almost as if we have a virtual companion at our fingertips, ready to assist with any HIE-related questions or concerns, day or night. It’s natural to turn to digital tools for research and support, but here’s the catch: while AI offers convenience, it doesn’t always […]

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At Hope for HIE, we hold the providers who showcase their commitment and passion for research and improved clinical care practices for those impacted by HIE’s various outcomes near and dear to our hearts. So when Dr. Laura Gilbert, a pediatric neurologist at Lurie’s Children’s Hospital, teamed with us during Cerebral Palsy Awareness Month to shed light on a prevalent […]

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UPCOMING EVENTS

Navigating Parenting with Limited Support - June 18 @ 12:00 pm - June 18 @ 1:00 pm

Join Hope for HIE on Tuesday, June 18th, at 12:00 PM ET for our video support group session that will explore how to navigate parenting a HIE child with a limited support system. ➡️ In this closed Zoom meeting led by Hope for HIE’s licensed social worker, Haley, and facilitated by one of our peer support mentors – Nicole Carrillo – […]

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HIE Pride Parents Support Group - June 25 @ 12:00 pm - June 25 @ 1:00 pm

Join Hope for HIE on Tuesday, June 25th, at 12:00 PM ET for our video support group designated for HIE parents in our LGBTQIA+ community. ➡️ In this closed Zoom meeting, which is led by our social worker, Haley Thomas, and facilitated by a dedicated HIE parent of our community –Krysta Hartlen Côté  – families will be engaged in a space […]

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Child Life Q&A - Learn About SOAR - June 26 @ 12:00 pm - June 26 @ 1:00 pm

Join Hope for HIE on Wednesday, June 26, at 12 PM ET for our Live Q&A session with Annie Gunning, Hope’s certified child life specialist, to discuss SOAR, her new and upcoming peer support group for children ages 7-12 and 13-17 with HIE. Specifically, we’ll discuss: 📌 The foundational pillars of SOAR — Support, Ownership, Advocacy, Resiliency 📌 How she’ll […]

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Learning, Attention, and HIE - Peer Perspective Series - June 27 @ 11:00 am - June 27 @ 12:00 pm

Join Hope for HIE on Thursday, June 27 at 11:00 AM ET for the latest session of our HIE Peer Perspective series. We’ll discuss how to navigate learning and attention differences and disabilities that may come with an HIE diagnosis. ➡️ This closed Zoom support session is led by Hope for HIE’s licensed social worker, Haley, and is facilitated by […]

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Exploring HIE and Sleep: Q&A with Dr. Renee Shellhaas - June 28 @ 12:00 pm - June 28 @ 1:00 pm

Join Hope for HIE on Friday, June 28 at 12 PM ET for a live Q&A with Dr. Renee Shellhaas, Pediatric Neurologist and Researcher at Washington University in St. Louis, to explore the relationship between HIE and sleep. Key topics will include: 📌 The prevalent sleep issues that present in children with HIE 📌 Dr. Shellhaas’s stance on integrating patient-family […]

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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

We regularly work with researchers, clinicians and industry partners 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 10,000 families worldwide, 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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