Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy

06/17/2026

Join Hope for HIE on Wednesday, June 24th, at 12:00 PM ET for a virtual support group focused on Mild Outcomes — open to parents and guardians seeking additional support and guidance.

➡️ This closed Zoom session will be led by our certified social worker, Jen, and facilitated by Hospital Ambassador, Kacie M.

Together, they’ll create a supportive space to share, connect, and explore:
📌 Survivor’s guilt & comparison
📌 Trauma despite a mild outcome
📌 Living with uncertainty
📌 Ambiguous grief
📌 Permission to struggle and take up space

🔗 Register: Tinyurl.com/MildOutcomesJun26

06/16/2026

It's Toolbox Tuesday!
🎨💉🫧🩺💫

SeriousFun Children's Network empowers kids facing serious medical challenges to find joy, discover belonging, and reimagine what’s possible through their global network of 30 independently owned and operated camps and programs, free of charge.

Search for camps that fit your needs and, when you’re ready, visit their websites for the latest updates on conditions served, program availability, seasonal offerings, and ways to get involved.

Check them out! ⬇️
🔗 https://seriousfun.org/

06/16/2026

Our June eNewsletter is here! ☀️

Check it out 📩
https://conta.cc/4uxT5zj

Sign up to receive our monthly eNewsletter ⬇️
hopeforhie.org/hopeconnections/

06/15/2026

The challenges hardest to see are often hardest to name: memory, attention, organization, emotional regulation.

New research is shifting how we understand neonatal brain injury — and why follow-up can't stop at age 2:

https://hopeforhie.org/research-update-what-the-milestones-apps-missed

06/14/2026

HIE is a catalyst diagnosis. This means it is the underlying/starter diagnosis that causes secondary diagnoses.

What are the most common diagnoses from HIE?

🔹 Epilepsy: HIE is the leading cause of , the 2nd leading cause of , and a leading cause of other common and rare epilepsies such as .

🔹 Cerebral Palsy: HIE can lead to conditions such as cerebral palsy, dystonia, spasticity (hypertonia), hypotonia, dyskinesia, chorea, and others, which may impact mobility, coordination, and daily function.

🔹 Developmental & Cognitive Challenges: Many children with HIE experience intellectual disabilities, learning differences, speech and language delays, and executive functioning difficulties.

🔹 Medical & Sensory Differences: HIE can affect vision, hearing, feeding, digestion, and sleep, leading to diagnoses like cortical visual impairment (CVI), auditory processing disorders, gastrointestinal issues, and sleep disturbances.

🔹 Loss of Life: In some cases, HIE can be severe enough to result in infant or childhood loss. Families navigating loss from HIE are not alone—there is a strong community of support available.

🔗 Visit HIE.Support for tailored support programming and resources.

06/13/2026

Summer is full of opportunities to support your child's emotional wellbeing and it can be as simple as play. 🌊☀️

Join Hope for HIE on Saturday, June 20, at 12:00 PM ET for a Child Life Q&A with Annie Gunning, CCLS, to talk about all the ways children can use play as a way to cope.

Annie will share simple, creative summer activities that help children express emotions, build coping skills, and feel more connected. In this session, we'll explore:

✦ Why play is a child's most natural language for processing big feelings
✦ Sensory and movement activities that support emotional regulation
✦ How to recognize when play is helping your child cope with stress or medical experiences
✦ Creative ways to encourage expression without pressure to talk
✦ Simple sibling connection activities for the whole family
✦ How to create a calming space at home without breaking the bank

Tune in for the stream on our Facebook or YouTube channels:
🔗 Facebook.com/HopeforHIE
🔗 YouTube.com/HopeforHIE

&A

06/12/2026

Meet our newest Peer Support Mentor!
Laura Hébert, Mom to Louis

Peer Mentorship is a powerful way to give back to our community. Laura shares why she decided to become a Peer Support Mentor:

"I want to show parents that hope exists, even when the path feels impossible. I’m living proof that even in the hardest journey, life can still be beautiful - and that taking care of yourself is not selfish, it’s just as important as caring for your child."

Read more about Laura's story:
https://hopeforhie.org/new-peer-support-mentor-meet-laura/

06/12/2026

Coming up on Monday, 6/15 ⬇️

🔗 Register: Tinyurl.com/BehavioralHealthJun26

Join Hope for HIE on Monday, June 15, at 12:00 PM ET for a peer support group focused on navigating behavioral health and adolescent emotional challenges in children affected by HIE.

➡️ In this closed Zoom meeting experience, led by our certified social worker, Jen, parents and legal guardians will have space to connect with other families navigating emotional, behavioral, school, and mental health challenges that may arise throughout the HIE journey.

🔗 Register: Tinyurl.com/BehavioralHealthJun26

06/11/2026

Join Hope for HIE on Thursday, June 18, at 8:00 PM ET for our LGBTQ+ Parents & Guardians Peer Support Group. LGBTQ+ parents and legal guardians of children affected by HIE are invited to participate in this support group.

➡️ In this closed Zoom meeting, which is led by our MSW student intern, Kimberly, families will be engaged in a supportive space of connection and community, talking with others who understand both the HIE journey and the unique experiences LGBTQ+ families may navigate along the way.

🔗 Register: Tinyurl.com/LGBTQParentsJun26

06/11/2026

Processing an HIE diagnosis as a parent while acknowledging the trauma that often comes with it can be a complex process. 🩵

In our latest Peer Perspective stream, Kat K., Ravi S., and Kori M. shared their experiences navigating their own mental health journey after their child's HIE diagnosis.

We've rounded up the key takeaways from their conversation — read the full blog post, watch the YouTube video, and check out the key takeaways below ⬇️

🔗 Tinyurl.com/ParentalMentalHealthPPS