Kids—whether they're living with HIE or growing up alongside a sibling who is—deserve to understand what's happening in their world. Because the truth is, talking about HIE doesn't have to be overwhelming. It can start with a question, a picture book, or even a quiet moment together on the couch. When kids are given the language and space to learn about HIE in a way that meets them where they are, it can help them feel safer, more understood, and more empowered.
That's why, with the help of Annie Gunning, our Certified Child Life Specialist, we've created several resources to help children with HIE, their siblings, and their caregivers navigate these conversations together—with honesty, empathy, and care.
Whether your child is asking questions—or still building the words to do so—we hope these tools help you feel more confident in starting the conversation.
Siblings are often the quiet observers in the background—watching therapies happen, noticing extra appointments, and sometimes feeling a little confused or left out. This resource is designed just for them - an easy-to-understand PDF that helps explain what HIE means, how it affects the brain, and why their sibling might need extra help in certain areas. It also walks through common conditions linked to HIE—like epilepsy, cerebral palsy, autism, and sensory differences—in a way that's approachable and reassuring.
We'd also like to mention - it validates that it's completely okay to have big or even mixed feelings about everything—and reminds siblings that they still have a very special role in the family.
This resource is also available on our online Super Sibs platform (see sign-up details below or in the Quick Registration Link section at the bottom), as well as through the Support Spot App by Child Life on Call—free for all HIE families!
We're thrilled to offer our support programming designed specifically for siblings in our community. Created by Annie Gunning, Hope's Certified Child Life Specialist, these Super Sibs digital kits are filled with engaging, age-appropriate activities and meaningful resources to help celebrate their unique strengths and honor the important role they play while creating a supportive space where they can grow and thrive.
As kids grow, so do their questions—especially about their own experiences. This resource, tailored both for children living with HIE ages 7-11 and those 12 and up, was created to help those who are beginning to wonder how their brain works, what HIE is, and how it might affect the way they move, speak, learn, or process the world around them.
As Annie Gunning, CCLS, explains, it's a starting point for meaningful conversation. Whether read together with a parent or explored independently, this resource builds confidence, invites curiosity, and empowers kids to feel more connected to their own story.
Have a younger child under age 7?
Annie is happy to help tailor this conversation and curate age-appropriate tools and suggestions just for them. Reach out anytime at HIE.Support.
If you’d like to access the interactive features shown in this PDF, you can explore them through our SOAR platform— look below for details!
If you’d like to access the interactive features shown in this PDF, you can explore them through our SOAR platform— look below for details!
SOAR - Support, Ownership, Advocacy, Reslience - is a unique initiative designed to support children as they grow into their lives with HIE, helping them feel seen, supported, and connected.
Developed by Annie Gunning, Hope for HIE’s certified Child Life Specialist, SOAR was created in response to what so many parents in our community have shared: the desire for their children to connect with peers who truly understand the challenges and experiences that come with HIE. You can take a look at some of our FAQs here to learn more, or sign-up below!
Talking to your child about their HIE diagnosis isn’t always easy—but knowing when and how to start can make a big difference. As children grow and begin to notice differences in how they move, learn, or interact with the world around them, it’s completely natural for questions to arise.
We’re continuously building and refining resources to help you navigate these conversations with confidence and care. Take a look at our current offerings below!
Starting this conversation can feel like a big step, but it doesn’t have to happen all at once. Many parents wonder when the “right time” is to begin, and the truth is—there’s no one-size-fits-all answer. Every child is different, and often the best approach is to follow their lead, responding to their questions and cues with honesty and reassurance.
That said, the Q&A session and key takeaways below can offer helpful guidance and give you a solid starting point!
As part of our HIE Peer Perspective Series, this upcoming session will feature real parents sharing how they’ve navigated conversations with their children about HIE. Stay tuned for a release date as well as insights, tips, and encouragement from families who’ve been there!
To register for Super Sibs as a brand-new member, visit SHOP.HOPEFORHIE.ORG
*️⃣ Ensures we have an appropriate shipping address for fun mail drops!
*️⃣ Ensures we have a proper email address to send you updated communications and upcoming opportunities!
*️⃣ Notifies us to email you with the 2025 Join/Access Code to our Canvas platform!
To register your child again for the 2025 year, visit Tinyurl.com/HFHSuperSibs
*️⃣ From there, you'll select the support programming that suits your family's needs.
*️⃣ Ensures we have an appropriate shipping address for fun mail drops!
*️⃣ Ensures we have a proper email address to send you updated communications and upcoming opportunities!
*️⃣ Notifies us to email you with the 2025 Join/Access Code to our Canvas platform!
To register for SOAR, visit Tinyurl.com/SOARforHIE
*️⃣ Ensures we have an appropriate shipping address for fun mail drops!
*️⃣ Ensures we have a proper email address to send you updated communications and upcoming opportunities!
*️⃣ Allows you to inform us of any needs, accommodations, interests, and affinities of your child!
Hope for HIE offers a range of resources to support and guide these conversations, as well as foster emotional connection, peer support, and understanding for every member of the family.
Annie Gunning, our on-staff Certified Child Life Specialist and Grief Counselor, provides developmentally appropriate support to help families navigate challenges, build coping strategies, and strengthen connection through meaningful activities and emotional tools—for parents, siblings, and extended family members.
We are able to connect you to resources worldwide, tapping into additional individualized and local programs to support your whole family along the way.
Hope’s Peer Support Mentor program connects families—whether they’re newly navigating an HIE diagnosis or further along in their journey—with experienced, compassionate, trauma-informed peer mentors. These trained parent leaders offer one-on-one or on-call emotional support, creating space for shared understanding, encouragement, and connection across a variety of experiences and backgrounds.
Be on the lookout each month for support group topics tailored to your needs—such as navigating conversations about your child’s HIE diagnosis—as well as special HIE Peer Perspective panels featuring experienced members of our community sharing insights and guidance. Led by Hope for HIE’s social worker, these offerings provide meaningful opportunities to connect, reflect, and explore important conversations together.
We've partnered with Support Spot by Child Life on Call to expand access to supportive resources for families navigating HIE. Free and accessible to most HIE families (international families can access the same content directly at HIE.Support), this app offers tools to support your child across many areas of medical life.
To get started, simply download the Support Spot app, select Hope for HIE, and enter the code 048325.
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Jen Schaefer, our on-staff social worker, offers families a compassionate and caring starting point by helping them navigate available support resources, foster connection, and build a strong foundation for emotional well-being across the entire family.