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

Get Support

Hope for HIE began with a virtual network of parents seeking to connect after their child had been diagnosed with HIE (Hypoxic Ischemic Encephalopathy). We have families all around the globe, and many local groups that host meet ups, awareness and fundraising events, and other opportunities to connect.

SOCIAL WORKER-LED SUPPORT GROUPS

Led by our NICU-trained perinatal social worker, Vanessa Zinke, LCSW, we host weekly support groups for our HIE families.

Referring a family from the NICU? Contact social worker, Vanessa Zinke, LCSW.

Email for Support

PEER SUPPORT MENTOR PROGRAM

Hope for HIE provides trauma-trained peer mentors for 1:1 mentorships for those new to HIE and those new to HIE loss. Mentors and mentees are paired through a process developed by Hope for HIE’s social worker. To join the program, please use the forms below:


FACEBOOK-BASED PEER SUPPORT GROUPS

We host over 100 topic-focused and location-based support groups found on Facebook. 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.

We also have subgroups for HIE Dads, Pride Parents, Foster & Adoptive Families, Single Parents, and more. We host outcomes-based groups for those who may be more on the mild/moderate side, those whose children have more severe impacts, and for our families who have lost babies and children to HIE. We host age groups as well – for Newly Diagnosed families within the first year of diagnosis, to ages 10 and up, and for people born with HIE 18+.

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.

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

Need additional information or support?

Contact Us

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