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

Get Support

We know that HIE is complex, and there is much uncertainty, grief and trauma to process, no matter what the outcome a family is facing. We were founded first as a peer support group, and have grown to provide comprehensive support programming and resources for families, worldwide, facing neonatal or pediatric-acquired Hypoxic Ischemic Encephalopathy.

Know that no matter where your journey with HIE takes you, you are never alone.


Complete the “Submit Request” form below so our staff can connect you to the resources that best support your needs.

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Please Note: We are not medical professionals and cannot review medical records or review diagnostic tests (like EEGs, MRIs) or provide medical advice and diagnostic information.

Support Programs & Services

Social Worker Support

Haley Thomas, LMSW, Hope for HIE’s social worker, can connect families to local and regional resources such as counseling and mental health provider referrals, living assistance programs, and other support services to meet the needs of individual family situations, as a member of the Neurology Social Services Network.

She also leads video support groups connecting various demographics in our community. You can learn more by visiting the EVENTS page.

Fill out the intake form above to specify which services you are interested in learning more about, or connecting into, or to reach Haley via email, click below.

Referring your family, or an HIE a family from the NICU or PICU?

Contact Social Work

Peer Support Network

We host over 100 age, location, outcome, demographic and topic-focused support groups found on Facebook in alignment with our Community Guidelines to ensure a safe, consistent experience.

Upon requesting, you will be sent a few questions to be verified before adding you into our network. All questions need to be answered before you will be granted entry to ensure we are connecting our community in safe and meaningful ways.

Find Your Group

If you are a legal parent or guardian of a child with HIE, we invite you to request our Parent Support Hub where you can connect with thousands of other families from all around the world, across the spectrum of HIE backgrounds to find peer support, be linked in further to educational resources, and learn from one another in your journey.

Worldwide Parent Support Hub

NEWLY DIAGNOSED FAMILIES

If you are new to the journey, within the first year post diagnosis, our New to HIE group has designated administrators and moderators who come with years of experience and are standing by to support the unique needs of our new families who find us. Our dedicated Peer Support Mentors are also available to connect with to help serve as a support during the first year post-diagnosis.

New to HIE Forum

LOSS FAMILIES

We bring the HIE loss community together with dedicated support through our video support groups, online Facebook community, and a special parenting living children after HIE loss subgroup. Topics of support include mental health, coping with grief, relationships, and pregnancy after HIE. Our dedicated Peer Support Mentors are also available to connect with to help serve as a support for families facing loss due to HIE.

Loss Support Group

SIBLING SUPPORT

Siblings to children with HIE have their own unique experience to share. We work to connect similar age and interest super siblings to build peer support and bonds through video calls, and other specialized supports for siblings.

Super Sibs Group

GRANDPARENTS, AUNTS, UNCLES, OTHER EXTENDED FAMILY

If you are a grandparent, aunt, uncle or other extended family member, we have a group for you. We know that HIE impacts the whole family, and we want to connect you to others who need support for themselves, and want to learn how best to support the immediate family going through HIE.

Extended Family Support Group

Peer Support Mentorship – Newly Diagnosed Families

Hope for HIE provides trauma-trained peer mentors for 1:1 mentorships for those new to HIE within the first year of diagnosis, either from birth or acquired HIE in childhood. Mentors and mentees are paired through a process developed by Hope for HIE’s social worker.

To join the program, please use the form below:

Request a Mentor – New to HIE

Peer Support Mentorship – New to Loss Families

Hope for HIE provides trauma-trained peer mentors for 1:1 mentorships for those new to HIE loss, either from birth or acquired HIE in childhood. Mentors and mentees are paired through a process developed by Hope for HIE’s social worker.

To join the program, please use the form below:

Request a Mentor – New to HIE Loss

Weekly Social Worker-Led Video Support Groups

Led by Hope for HIE’s social worker, we host weekly video support groups for our HIE families via Zoom to connect and receive support in a structured non-judgmental space, focusing on learning coping strategies, connecting with community, and empowerment in the journey with HIE.

Learn more, and register below:

Referring your family, or an HIE a family from the NICU or PICU?

Contact Social Work

Child Life Services

Led by our certified child life specialist, Annie Gunning, CCLS, CIMI, GC-C, families can connect in for specific services to help deal with medicalized life, supporting the whole family.

This includes developing coping plans for medical visits, inpatient hospitalizations, infant massage, developmentally appropriate play-based coping strategies, sibling, hospitalization, bereavement & loss support.

Child Life On Call App

All Hope for HIE families who have access to the app store on iProducts or Android can access the Child Life On Call App for FREE!

For those who may not have access, Annie can also share all resources from the app with families who request them through the intake form at the top of this page.

Download Now

Referring your family, or an HIE family you work with, into Child Life services?

Contact Child Life

Bereavement & Loss Support

Hope for HIE provides comprehensive support programs and services to help families facing bereavement and loss due to HIE. Both Hope for HIE’s social worker and child life specialist are available to support the entire family.

We also host HIE Remembrance Day every April 20th during HIE Awareness Month, and host an online remembrance vigil for our loss families.

In addition, our Peer Support Mentors and HIE Loss Support Group are available for peer support connections.

Sibling Support Program

Siblings to children with HIE have their own unique experience to share. We work to connect similar age and interest super siblings to build peer support and bonds through video calls, and other specialized supports for siblings.

Interest Form

SOAR Tween & Teen Peer Support Program

HIE kids need support for their journey including connection to a community of peers.

Welcome to our SOAR program — Support, Ownership, Advocacy, Resilience — for ages 7-17, a program to connect and empower our HIE kids through peer connections, self-advocacy, support and FUN as they grow into their life with HIE.

Annie Gunning, Hope for HIE’s Child Life Specialist, will facilitate this program and include video age group sessions, and interest/affinity groups and work with various accessibility needs to maximize participation.

Sign Up


Looking for educational and support materials for your NICU, PICU or clinic?

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Need additional information or support?

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