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.
We host over 100 age, location, outcome 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.
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.
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.
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.
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.
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.
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:
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:
Led by our certified child life specialist, Annie Gunning, CCLS, CMIT, families can connect in for specific services to help deal with medicalized life, supporting the whole family. This includes developing coping plans, sibling, hospitalization and loss support.
Referring your family, or an HIE family you work with, into Child Life services?
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.
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Social Worker Support
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.
Referring your family, or an HIE a family from the NICU or PICU?
Contact Social Work