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

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We know summer camp can be a magical experience—full of connection, growth, and plain old fun. But for many of our families, the decision to send a child to camp often comes with a few extra layers to think through. Medical needs. Accessibility. Safety. Inclusion. It can feel like a lot. That’s why we invited Angela Bryan, Certified Child Life […]

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As the saying goes, “It takes a village,” and at Hope, we have a strong one. Every month, our HIE Peer Perspective series brings together committed members of the HIE community to share their valuable insights into the diverse impacts and outcomes of HIE, offering firsthand experiences and guidance on navigating its various challenges. In our latest session, parents from […]

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As the saying goes, “It takes a village,” and at Hope, we have a strong one. Every month, our HIE Peer Perspective series brings together committed members of the HIE community to share their valuable insights into the diverse impacts and outcomes of HIE, offering firsthand experiences and guidance on navigating its various challenges. In our latest session, parents from […]

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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.

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Access to mental health support and resources is critically important for families who find themselves in the NICU and PICU. Parents whose children are admitted to the NICU or PICU have a 45-50% greater incidence of mental health disorders such as PTSD, Anxiety & Depression. There also remains significant inequity for non-white, non-preemie, non-maternal patients and families in the NICU, […]

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We know support isn’t one-size-fits-all, and while we often focus on parents and caregivers, our kids—both those diagnosed with HIE and their siblings—need just as much care, understanding, and connection. Over the past year, and under the direction of Annie Gunning, Certified Child Life Specialist and Grief Counselor, we’ve been listening, learning, and refining—piloting new content, gathering feedback, and adjusting […]

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Today is the last day of HIE Awareness Month. I thought I’d spend the whole month talking about it—sharing our story, raising awareness, educating. But I didn’t. Because even a year later, some of the trauma is still too raw to put into words. Even with Heidi developing right on track…Even though you’d never know she had such a scary […]

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At the end of March 2025, Neuren Pharmaceuticals publicly shared their intent to explore their current approved neurodevelopmental NNZ-2591 compound for an indication in neonatal Hypoxic Ischemic Encephalopathy. Hope for HIE has been engaged to provide patient-family input to all parts of the development process — from study design to longitudinal follow-up. “This is a very exciting time for therapeutic […]

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When your baby is diagnosed with HIE, it can feel like you’ve suddenly been dropped into a world where everything is unfamiliar — a whirlwind of medical terms, acronyms, and test results you’re expected to understand on the fly. It’s like learning a completely new language overnight, all while navigating the emotional weight of the NICU. From lab values and […]

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Over the last 2-3 years, HIE scientific advancement has been accelerating at a quick pace — both in finding ways to learn more to decrease the incidence of neonatal and pediatric-acquired HIE, and in therapeutic and care advancements to improve the quality of life for babies, children and families. Hope for HIE has been a pivotal part in the HIE […]

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UPCOMING EVENTS

Pregnancy after HIE Support - June 2 @ 12:00 pm - June 2 @ 1:00 pm

Join Hope for HIE on Monday, June 2, at 12:00 PM ET for our video support session designated for HIE moms navigating another pregnancy after HIE.  ➡️ Led by our certified social worker, Jen, and facilitated by one of our Peer Support Mentors, Ashley, this group will engage families in a safe space to discuss:  🎯 Managing the trauma of […]

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Newly Diagnosed Families Support - June 5 @ 8:00 pm - June 5 @ 9:00 pm

Join Hope for HIE on Thursday, June 5, at 8:00 PM ET for our monthly video support group session for parents and legal guardians new to HIE (within one year of diagnosis).  ➡️ In this closed Zoom meeting experience, led by our certified social worker, Jen, and facilitated by one of our Peer Support Mentors, Crystal, families will be engaged […]

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Navigating a Severe Diagnosis Support - June 9 @ 12:00 pm - June 9 @ 1:00 pm

Join Hope for HIE on Monday, June 9, at 12:00 PM ET for our video support group designated for parents and legal guardians navigating the complexities of a severe HIE diagnosis. ➡️ This closed Zoom support session is led by Hope for HIE’s certified social worker, Jen, and is facilitated by one of our Peer Support Mentors, Allison, who will […]

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Loss Families Support - June 12 @ 8:00 pm - June 12 @ 9:00 pm

Join Hope for HIE on Thursday, June 12, at 8:00 PM ET for our video support group session designated for loss families. Parents and legal guardians who have lost their children due to HIE, either at birth or in childhood, are invited to participate in this support group. ➡️ In this closed Zoom meeting led by our certified social worker, […]

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Pregnancy After HIE: Non-Birthing Partners Support - June 19 @ 8:00 pm - June 19 @ 9:00 pm

Join Hope for HIE on Thursday, June 19, at 8:00 PM ET for our Pregnancy after HIE support group designated for non-birthing partners.  ➡️ This closed Zoom meeting, facilitated by our certified social worker, Jen, and one of our Peer Support Mentors, Romm,  provides a safe space to discuss: 🎯 The emotional journey of witnessing a medical emergency 🎯 Balancing […]

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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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