Hope For HIE - Hypoxic Ischemic Encephalopathy

There probably isn't enough room or time to say how much this organization truly means, not only to me but to our family as a whole. We have had many ups and downs over the past seven years with our daughter, Lucy; however, the uncertainty is always tamed by a tribe of families who understand the journey, sit in the difficult spaces, and above all, offer hope, guidance, and love. Without Hope for HIE, I can't fathom how lonely and isolated we would feel. The education, awareness, and community provided by Hope for HIE is invaluable.

I don't know where I would be without Hope for HIE. My son had a brain injury shortly after his birth in 2012 and I felt so scared and alone. Hope for HIE provided so much support. I learned how to find hope in this new journey we were on. I learned how to be an advocate for my son's needs. I learned how to be an ally for people with disabilities. I learned, and am still learning, how to work for the kind of future my child, and all kids impacted by HIE, deserves.

Now, 8 years later, I volunteer with Hope for HIE to provide that same support to parents who are new to this diagnosis. Giving back to an organization that has given me so much gives me a sense of purpose - a way to do good and make a difference.

I was lucky enough to find this organization within a few weeks of my daughter’s birth and HIE diagnosis. The level of support, guidance, information and inspiration this group has given me in the 6+ years since has been next to none. Their focus on peer support and hope regardless of the child’s outcome is so valuable in this journey.
As I have gotten more involved through volunteering over the years, I have continually been impressed with the level of organization and collaboration present in all aspects of Hope for HIE. They are always striving to improve and find new ways to reach more families. Their passion is so clear. I am incredibly grateful to get to be a small part in an organization that is so selfless and committed to their tribe.

HOPE for HIE has been a “life preserver” for me. I found HOPE for HIE when I was barely treading water. I needed something to keep from drowning in the mysteries and sadness of this new journey. When you have a baby, you don’t expect anything to go wrong. Then, out of nowhere, I was presented with a baby who wasn’t alive at the time of his birth. I was told he may not live, even after his first breath finally occurred. That if he did survive, the journey would be bleak. That was it, no further information, and the internet was of little help at that time. About 6 months after my son Colbey was born, I was in some of the darkest hours. Then I found this group, HOPE for HIE, who I now consider my second family and lifeline. The community of other moms/parents who understood why I had so many questions, so much heartache, so much fear. I was second guessing every decision I made for my child, more than I ever had before. There was a group for everyone, to feel like they had a home for their journey. A virtual support group that had experienced the same type of beginnings for their children and their experiences along the way. It was so amazing to have a group of people I trusted, that I could ask random questions to. Even if they didn’t have the answers, I felt like they understood. Over the course of almost 6 years, I have found new subgroups in the support community that I lean on as our journey continues to unfold. I have been able to attend regional & national mom retreats to meet some of these wonderful ladies in real-life to make deeper & stronger connections. I have made some strong friendships that I couldn’t imagine living without. I now find myself with the ability to start giving back to the support group, offering my own experiences, for the newer families joining that have questions, heartache, and fear of the unknown. I still don’t know what the ending of our journey will look like...but I do know that I have the most wonderful group to continue supporting me along the way. For the good, the hard, and everything in between, HOPE for HIE is there for me & my family, continually offering hope throughout it all.

Hope for HIE is a life-changing organization for families who are affected by Hypoxic Ischemic Encephalopathy.

After my daughter's HIE brain injury, I felt like I was adrift and alone in a sea of uncertainty. We were thrown into an extremely difficult, complex world and life that no one outside of pessimistic medical professionals seemed to understand. I came across a reference to the group several years after my daughter's brain injury. I requested membership to the group and then had forgotten about the request until several months later I noticed the approval in my hidden Inbox (that had been there since I'd inquired).

I visited the group online and within 10 minutes had tears streaming down my face because I felt that I'd been rescued from the rough seas of uncertainty I'd been fighting for years. I discovered my tribe. These were families, that although our journeys were each unique, who understood the experience. There was a huge range of outcomes and experiences to tap into. The brain trust in this group is invaluable. And the bonds between these families are unmatched.

The leadership in this group is so strong and they strive to make sure that families find out about the support available right after the injury by reaching out to hospitals, NICUs and doctors all around the world. Hope for HIE sends information and care packages to new families, hosts local meetups, organizes parent and family retreats and is now collaborating with medical and research organizations to boost knowledge about Hypoxic Ischemic Encephalopathy and the cascade of medical conditions that tend to result from the injury. They have organized a multitude of subgroups to address the mosaic of concerns that comes with HIE parenting including Mental Health, Self-Care, Sibling Support, Extended Family Support, Regional Support, Parenting, Medical Conditions, Treatments, Loss and many more.

I am so honored to be a part of this group and am grateful for the support through our HIE journey. I hope through this organization that I can help other parents navigate uncharted territory and give them the support they need during one of the most difficult parts of their lives.

I went from being a member to a volunteer to serving on the board with Hope for HIE because of how important this community has been to me and my family. After my daughter's diagnosis with HIE, I felt so very alone and lost. Hope for HIE has been my life boat, helping me make connections, learn from others, build resources, and always find hope. As a board member now, my goal is to help make sure no family faces HIE alone. I want to be sure families find support, resources, and the community they need in order to help them and their child live their very best lives. Hope for HIE has helped me do that by giving me a purpose. If our lives have to be affected by HIE, we can at least use the knowledge and experiences we gain to help others that are newer to this journey. That is what Hope for HIE means to me.