We’re constantly inspired by the incredible families who not only navigate the challenges of their journey but also share their stories, support, and kindness to uplift others.
Families like The Hartzel Family, who have relied on Hope for HIE’s Child Life programming and services to help navigate the unique challenges of their journey, show just how powerful community, connection, and support can be. Their experience highlights the importance of support for the entire family, ensuring that no one is forgotten and that every member has the resources and guidance they need to face their journey with confidence and resilience.
Jennifer, Tyler, Lane, Elsie, and Bradford
Can you share a bit about your connection to Hope for HIE?
Our journey with HIE began in November 2013 when our eldest son, Lane, was born. Everything seemed normal at first – an uncomplicated pregnancy and labor. However, during birth, Lane suffered a traumatic brain injury. A blood vessel to his brain was severed, leading to a hypoxic episode and the loss of nearly a quarter of his blood supply between his skull and scalp. Within 24 hours, the NICU team suspected he was having seizures, and once confirmed, we were quickly transferred to a children’s hospital. Just over 48 hours old, we first heard the diagnosis “Hypoxic Ischemic Encephalopathy” and were given the worst-case scenarios for Lane’s future.
Those first days, weeks, months, and years were a blur. We were constantly sprinting to hit milestones, attending therapies, and doing everything we could to support him. Finding Hope for HIE felt like an answered prayer. While we’re fortunate to have family and friends who support us, parenting a child with special needs comes with fears, challenges, and questions that no one outside the HIE community can fully understand. The Pregnancy after HIE support group gave me a safe space to process my own trauma from Lane’s birth as I prepared for our younger children. The online community through Hope for HIE has been an invaluable guide, helping us navigate this journey with hope and support.
Tell us more about your experience getting your daughter involved with our Super Sibs Program.
Our daughter, Elsie, is 3 years younger than Lane, and they’re the best of friends – though we may be a little biased! 😉 As Elsie has gotten older, she’s started to understand more about the long-term care Lane needs, and she’s witnessed him going through hospital stays and procedures. She’s also realized that her friends’ families function a bit differently than ours. We felt it was becoming really important for her to connect with other kids who were on similar sibling journeys and for Tyler and me to get some guidance on how to talk to her about what was happening with Lane. That’s when we discovered the Super Sibs program!
Over the past year, Elsie has loved receiving her own mail with activities just for her. She’s taken a lot of pride in being a Super Sib and had a blast celebrating her “Super Sib Day” this spring. It was a special day to honor her, all she’s been through, and what she brings to our family.
Tell us more about your experience working with Annie Gunning, Hope’s Certified Child Life Specialist.
Most recently, we reached out to Annie using the intake form on the Hope for HIE website. Two years ago, Lane got very sick with pneumonia and became septic. It all happened so quickly – he was at school with just a little congestion, and 12 hours later, we were rushing to the ER and straight into a sepsis trauma bay and PICU.
This past year, Lane has had several medical procedures and hospital stays, with two of the most recent ones happening this fall. They were very similar to his sepsis episode from two years ago, where he went from being fine to rapidly declining, and we had to rush him back to the hospital. These hospital runs were stressful for Tyler and me, and they also stirred up a lot of fear and worry for Elsie, who remembered that frantic day from two years ago. After one evening spent trying to calm her fears, I realized that Annie offered individual consultations for both kids and parents. I quickly filled out the intake form, and within a day, Annie emailed to set up a time to talk with me and then with Elsie.
They’ve now met several times via Zoom, and Elsie always looks forward to her sessions with Annie. The guidance and insight Annie has provided have been invaluable for both Elsie and us. Just two weeks ago, when we rushed Lane back to the hospital, Elsie managed it so much better, thanks to the tools and tips Annie had given us. The support has made such a difference for our family, and we’re incredibly grateful.
What impact do you believe these support programs and services have had on your family?
It’s hard to discuss the impact of this service without becoming emotional. Just like the Hope for HIE Facebook group provided my husband and me with a community, guidance, and information years ago, the Super Sibs program has helped ensure that NO ONE in our family is forgotten. Everyone is seen and taken care of on this journey.
Our youngest two children are living lives and walking a path with their oldest sibling that is unlike any of their peers. They are facing and will face fears, challenges, and emotions that I never had to deal with growing up as a child without a sibling with special needs. Just like I never want to fail Lane, it’s just as important that I don’t fail my other children, too. They need support, and I need the resources to educate myself to help them navigate this life.
Utilizing the Child Life Specialist, Annie, and the Super Sibs program have become two huge tools in my toolbox. They’re helping me make sure that everyone in our family gets the care and attention they need, and for that, I am so grateful.
What do you hope families take away from your story to help them on their HIE journey?
I hope that families learn that it’s okay not to have all the answers. It’s okay to admit that this journey is hard. Even if our kids seem like they are handling things well, gaining tools, resources, and support is just being proactive when a tough time comes.
You don’t have to be someone who attends every virtual support group, comments on every post, or has been actively participating in everything to reach out for support when you need it.
You are not alone. Your child with HIE is not alone. Your Super Sibs are not alone. Support is literally just a few clicks away, and it’s here when you need it.
What is one of your family’s favorite holiday traditions?
Every year, we dedicate a whole day to baking Christmas cookies. Once we’ve finished, we load the kids up in the van and drive around to deliver them to our neighbors. Our daughter absolutely loves baking with me in the kitchen, and Lane enjoys driving around and listening to Christmas music. Our youngest, at just 18 months, is just happy to be along for the ride! It’s a simple tradition that brings so much joy to our family.
The holiday season may only last a few short months, but the impact of supporting Hope to HIE is long-lasting. Consider joining in and making a difference, whether it’s through donations, volunteering opportunities, or spreading awareness of HIE.
Together, we can create a legacy of hope, compassion, and support that extends far beyond the holidays, leaving a lasting mark on families who need it most.
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