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

Resources for HIE Loss

You are never alone.

Losing a baby/child due to Hypoxic Ischemic Encephalopathy and its complications is one of the hardest and most heartbreaking experiences. We are dedicated to supporting our loss families in their immediate and longitudinal bereavement, grief and full-family needs.

The forget-me-not is a symbol of deep, true, forever love. We hope it brings comfort to you in knowing you are never alone in your grief or journey and can reach out to a community that will remember with you.

Message from Board Member, Becky Detlef

When my son Ethan died, I was able to connect with other HIE loss families who knew what I was going through in the Hope for HIE support network. I teamed up with other loss families to start the HIE Loss Facebook Group back in 2013.

I have been a proud part of building additional resources through the years for our loss community, as well as ensuring the loss voice is heard and represented at all levels of the organization. It is a tangible way to keep Ethan’s legacy alive.

On behalf of the Hope for HIE foundation, we want you to know our full organization is here for you in your grief, and we honor the memory and legacy of your loss.

Please do not hesitate to reach out and take advantage of the organizational resources we offer to support your family. No family should have to go through this, but know we are working hard to hopefully ensure no other family has to.

Support Resources

With Hope for HIE staff, volunteer and community resources, we hope to become a place where the legacy of your child continues strongly into the future, you receive the support you need, and feel a community surrounding you with love.

Social Worker Services

Haley Thomas, LMSW, provides families with a compassionate, caring starting point to connect into bereavement and loss resources.

Haley has over 14 years of experience as a medical social worker, and can work with each family to identify areas of need, tailored support, and local resources to ensure family needs are met.

You can email Haley to connect in below, or head to HIE.Support and fill out our intake form for more detailed support needs.

Email Haley

Child Life Services

Annie Gunning, CCLS, CIMI, GC-C, provides Child Life services for our families as a certified child life services professional. She is also a certified grief counselor, and has many years of experience supporting families through bereavement and grief, memory making, and full family support.

Connect with Annie

Child Life Support for Grief and/or Bereavement

What are Child Life Specialists?

Certified Child Life Specialists are educated and clinically trained in the developmental impact of illness and injury. 

In both healthcare and community settings, Certified Child Life Specialists help infants, children, youth and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain. (Association of Child Life Professionals, www.childlife.org)

A Child Life Specialist can provide the following supportive services:

  • Recommend and provide ideas for creative expression and therapeutic activities to facilitate positive coping and feeling identification 
  • Introduce, guide or provide supportive conversation regarding a new diagnosis, prognosis or end-of-life
  • Offer suggestions for meaning making and legacy building
  • Provide parental support/coaching regarding child development, typical responses and/or behaviors for surviving siblings.
    • Suggest coping strategies for each developmental level
    • Offer resources such as books, local organizations, camps

Peer Support for Parents facing HIE Loss

Peer support is the hallmark of Hope for HIE’s comprehensive support network. Connecting since 2010, we have thousands of families in our network, worldwide and dedicated spaces of support across many different experiences, demographics, and situations.

Our Facebook support group for HIE Loss is structured with a main support group and subgroups including parenting after HIE loss, neonatal loss, loss in childhood, & loss in adulthood.

Facebook Support Groups

Peer Support Mentor Program

In addition, we have trained Peer Support Mentors specifically available to help support families new to HIE loss, either in a 1:1 support capacity, or in our Peer Mentor On Call short-term support.

Video Support Groups

Held the 2nd Thursday of the month at 8 pm EST via Zoom, and led by Hope for HIE’s social worker, HIE loss families come together through a video support group to find community and discuss their journey with others.

Additional topics and subgroups have been formed in the past including pregnancy and parenting after HIE loss, & HIE loss dad chats.

Learn More

Remembrance Commemoration Gift

A small token of remembrance is available to each HIE loss family, with the forget-me-not design.

The forget-me-not is a symbol of deep, true, forever love. We hope it brings comfort to you in knowing you are never alone in your grief or journey and can reach out to a community that will remember with you.

Each family may request one commemoration gift, and we hope it is a tangible symbol that you are not alone in this journey.

Request Gift

Online Memorial Submissions

We host a 24/7 online memorial vigil for our loss families to remember and hold space for our HIE children gone too soon.

Submission guidelines:

  • Full name you’d like included
  • One photo to include
  • Dates you’d like included (typically birth and death dates)
  • Email above to outreach@hopeforhie.org
View Online Memorial

Super Sibs Support Program

Our Super Sibs program has specific age and developmentally-appropriate activities and connections for Super Sibs who have lost a sibling to HIE, free to families, funded by donations.

This program is available for loss sibs ages 0-17 & facilitated by our Child Life Specialist, Annie, who is also a certified grief counselor.

Sign Up

Peer Support for Extended Family facing HIE Loss

We have built out a subgroup and support for extended family (grandparents, aunts, uncles, and more) of babies and children who have died from HIE.

We hope this will be a helpful space for you and for your family:

Join Group

HIE Remembrance Day

Every April 20th, we hold worldwide HIE Remembrance Day, where our community pauses and joins into reflect and remember, and create our annual worldwide wave of light, lighting the night to show support for our loss families at 5 pm in each time zone.

Additional Resources:


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