Every April, HIE Awareness Month serves as a perfect time to elevate the voices of our community and our families. By sharing our stories and experiences with one another, we help to shape research and support services, and we build a stronger community and light the path brighter for the families to come.
These spotlights share a small part of each family's journey with their child's HIE diagnosis. They encourage us by sharing their sources of strength through hard times, how hope looks different today than in the very beginning, and why they choose to Hold onto Hope through it all.
Each of the families sharing had an injury and an outcome unique to them. Their paths here have all been different. But what they all share is this: they held on.
Our families are steadfast, enduring, and powerful. They are not fragile, and neither is hope.
What "Hold onto Hope" Really Means
We heard this again and again: in the beginning, hope isn't looking too far ahead. It's just the next hour. It can feel like the only thing you have to cling to.
“When Tripp was born, hope and prayer was all we had. We clung to it like it was the only thing keeping us afloat for a long time.”- Emily Blevins
“Hope for us means that Zoe will be able to enjoy this life, no matter how long or short it may be. Hope means that the worst moments of life still hold glimmers of better days with less pain and less suffering.”- Beth Arnold
“Hold onto Hope means staying steady through the unknown. Hope isn’t loud—it’s quiet, persistent, and strong.”- Ana Aragon
Gabrielle, mom to three-year-old Ophelia who has HIE, cerebral palsy, and epilepsy, put it this way—and we think a lot of our families will recognize themselves in her words:
““Hold onto Hope” isn’t passive for us. It is something we actively choose over and over again, each and every day. It’s not blind optimism. It’s grounded and earned. It’s built from lived experience, watching her do things we were once told might never happen. Hope, for us, is not about ignoring reality. It’s about standing in it and still choosing forward.”- Gabrielle Ward-Collier
For Camiryn, mom to nine-month-old Jream, holding onto hope has meant letting go of what she thought hope was supposed to look like:
“Before, I think hope looked like milestones and how I thought life was supposed to be. Then I realized it’s so much deeper than that. Hope for me now is found in the small things… the inch-stones. The wins. The moments most families overlook.”- CamirynStever
Finding Hope on the Hard Days
We ALL face hard days sometimes. We asked our families how they get through them and where their source of strength comes from.
“On the days where I am needing the most hope, I look back through photos of my child when he was young. They’re especially fun now that he can look with me. I find hope in the children and families I work with as an early intervention provider—it helps me to see how resilient children are.”- Melissa Bruce-Porter
“For me, when the days are hard, I breathe and tell myself ‘it won’t always be like this’ and I hold that close to me as a constant reminder that even though it’s rough at the moment, this moment will pass and we will continue to have more beautiful days.”- A'Miracle Caldwell
“Taking a break from information overload, and sometimes even a break from therapies. We try to lean on each other and we have gotten better at asking our extended family for help. Being more open and honest about current feelings so we can process them together. When things are really hard Wilder always smiles at the right time and that helps me!”- Jaycie Hilyard
“Listening to her laugh. Even on her bad days, she still smiles and laughs her way through.”- Jenn McLaughlan
Isabel, mom to seven-month-old Koah, was honest about how isolating those early days felt—and how different things look now:
“I wish I could go back and hug myself. I couldn’t look at my son’s MRI scan without sobbing. I blamed myself for the abruption even though I couldn’t control it. Our journey now is much more hopeful. I don’t feel alone like I did those first few weeks.”- Isabel Anderson
And Kayla, whose daughter Camie passed away at nearly two months old, continues to find hope through showing up for other families who are walking a similar road:
“In the beginning we hoped for positive outcomes for our daughter. When we found out she was severely impacted by HIE and brought her home on hospice care, we hoped for time. Now we hope for health for our living children, we hope that we keep Camie’s memory alive and that her siblings know her, we hope that she is making an impact in this world.”- Kayla Weber
What Hope Looks Like Now
Something we hear often from families who have been on this journey for a while: hope changes. It grows. It gets quieter, steadier. Less desperate, more sure.
“At the beginning, hope was mostly about searching for answers and understanding what was happening. Today, hope feels more grounded. It’s in the small improvements, the routines we’ve built, and the way we’ve learned to celebrate every milestone, no matter how small.” - Ivana Djurdjevic
“Today it feels like peace and acceptance. When we started this journey, it was full of fear and panic. Through careful research and outreach, we have learned to appreciate the small stuff and look to the future.” - Melissa Bruce-Porter
“At the beginning, hope felt fragile. It was tied to uncertainty, questions, and the fear of the unknown. Today, hope feels stronger and more grounded. It’s no longer just about outcomes. Now hope is about growth, resilience, and appreciating progress in all its forms.” - Jasmine Serrano
Courtney is a military mom to two-and-a-half-year-old Reyna, who was born with HIE after a uterine rupture, went through open heart surgery at one year old, and is now thriving in Germany. She describes hope as something that has moved from wishing to knowing:
“Hope for us has changed drastically. We no longer hope that she will make it out alive, we know she will thrive. We no longer hope she will be able to see and hear, we know she can. We allow her just to be herself, come what may, and we hope—and know—everything is going to be okay.”- Courtney Chenevey
Angela, mom to 14-year-old Liam, can look back across the whole arc of their journey now. When Liam was born in Burlington, Ontario, there was little information about cooling outcomes. They searched for stories like theirs and couldn’t find them. Today, Liam is a black belt in Taekwondo who loves fishing and rock climbing. Angela put it simply:
“Today our hope for Liam is that he finds his passion and is able to pursue it. That he lives a fulfilled life full of love and kindness. When he was born all we wanted was for him to be able to grow up—now we look forward to seeing what the future holds for him.”- Angela White
And then there is Razia, mom to 22-year-old Nura in Cape Town, South Africa. Nura was born via emergency C-section after a massive hypoxic event. She spent five days on life support. Family was brought in to say goodbye. And then Nura breathed. Razia’s perspective, more than two decades in, is something we want every newly diagnosed family to hold onto:
“Hope was a lot narrower in its definition 22 years ago. Hope meant can we make it till tomorrow. Now Hope means so much more—a belief, a trust, a confidence, a trial, a test, an acceptance. Hope means living every day. Hope means experiencing life while we can. Hope means we accept tomorrow is not promised.”- Razia Hisham
What Our Families Would Tell Those Navigating a New HIE Diagnosis
"It's okay to have grief and gratitude."- Nicole Allen
“Take it one moment at a time. You don’t have to understand everything all at once. Ask questions. Trust your instincts. You know your child in a way no one else does, and that matters. Find your people—you are not meant to carry this alone.”- Gabrielle Ward-Collier
“Advocate for your child and trust your instincts—you know them better than anyone. And most importantly, find your people. Connecting with other families who understand this journey can make all the difference. You are stronger than you think, even on the days you don’t feel like it.”- Jasmine Serrano
“Soak up as much feedback, information, and training you can from the NICU staff, and know that giving yourself a break or room to breathe is not a luxury, it is a mental health requirement.”- Julia Dailey
“Don’t be afraid to face reality, but take it in doses. Keep resources ‘favorited’ in emails or social media—they’re there when you’re ready. But take it in when you’re ready.”- Beth Arnold
“Take the time to mourn and grieve the life you thought you’d have. Cry for the child you thought you’d have. Then start to live the life you have now. Appreciate and accept the small things. Show gratitude for the amazing human that is with you now. Moments of sadness needn’t cloud your whole life with this fabulous child you have here and now. Live life now. There is so much joy—even in the pain and sadness—and so much to be grateful for. Our children are pure light and joy.”- Razia Hisham
Hope for What's Ahead
Our families are hopeful for the recent and future advancements in HIE research and what that means for improving outcomes and decreasing the incidence of HIE.
“The current care methods saved my son’s life. I know the future is going to continue to save babies globally and that is HUGE. HIE awareness is so important to me. I had no idea what it was when Tripp was born.”- Emily Blevins
"HIE and cooling therapy has come so far since even 10-15 years ago. We were shocked to hear cooling has only been in practice over the last couple of decades and feel so fortunate to have that in practice. This gives me hope for even more strides and advancements to be made especially in this technological age."- Alexa Westbrook
“I have hope for more widespread and thorough care during pregnancy for all women, not just those considered high risk. I hope for more knowledge around early interventions, and less of a fight when it comes to getting access to tools, supplies, and therapies our kids need.”- Kayla Weber
“What gives me hope is how much has already changed, and how many people are working to change it further. There is growing awareness, better research, and more emphasis on early intervention and long-term outcomes. Families are being heard in ways they weren’t before.” - Gabrielle Ward-Collier
“I didn’t even know what HIE was before Bryson’s birth. But since then we have found different research and clinical trials. I feel like they are making steps in the right direction.” - Cassie Lee
“I find hope in that families will get to bond with their babies sooner after birth. I didn’t hold my daughter for 4 days and it traumatized me in ways I’m still working through. With more family-centered care, I am hopeful that the traumatic experience of a HIE diagnosis will be made more bearable and less daunting.”- Jasmine Murray
“Medical advancement, acknowledging HIE, talking about outcomes, family support, social media making awareness so much easier, connecting with other families—medical knowledge is moving forward to help our kids.”- Razia Hisham
Thank you to our wonderful families for sharing their stories throughout this HIE Awareness Month, reminding our community they are never alone.
To connect to our support programs and services, visit HIE.Support.
