We’re constantly inspired by the incredible families who find strength and hope, even in the earliest and most challenging stages of their journey.
Families like the Swanson Family, who are new to the HIE community after the birth of their 2-month-old daughter, Marlee, remind us how powerful connection and support can be. Their courage in embracing hope so early in their journey embodies the heart of what Hope for HIE is all about — a reminder that no family walks this path alone.
Taylor, Jacob, Kyelynn, and Marlee
Can you share a bit about your connection to Hope for HIE?
Marlee, our sweet 2-month-old, was diagnosed with severe HIE shortly after birth. Unfortunately, her respiration issues caused her to miss the window for cooling therapy, as the brain damage behind them wasn’t immediately clear.
At just 2 days old, Marlee began showing seizure-like activity, prompting an MRI that revealed significant brain injury. While her EEG hasn’t shown seizures, her movements are now thought to be dystonia. After spending 3 weeks in the NICU, Marlee came home for 3 weeks but was hospitalized again for a week and a half due to dystonia and neuro irritability. She’s now in an inpatient rehabilitation facility and is expected to stay until Christmas.
Because Marlee is still so young, her future needs are not fully known. Right now, she is G-tube fed as she doesn’t yet have a suck, swallow, or gag reflex. Her doctors believe she will likely be diagnosed with cerebral palsy, but the extent of her challenges won’t be clear until she’s closer to 2 years old.
Marlee is so loved by her family, including her 5-year-old sister and lots of cousins she hasn’t been able to meet yet. Mom and Dad are her dedicated caregivers, with the support of their wonderful family cheering them on every step of the way. Here she is sporting some of her HIE swag:
How did you find Hope for HIE, and what has this community meant to you in these early days?
I searched TikTok and Facebook for support groups and other families going through similar struggles. It’s been such a help—it gave us ideas of what to look out for and what to expect!
What helpful guidance or support have you received on your journey so far, and/or is there a piece of advice you’d share with other families just starting their HIE journey?
We have amazing support from our families, but we’re still figuring out what Marlee’s needs will be and what kind of support we’ll need as we go. My biggest advice is to advocate for your baby! Trust your instincts and fight for your HIE little ones. ?
We were told over and over by doctors and nurses that Marlee was just colicky and there was nothing we could do. I kept pushing, and finally, someone listened and figured out it wasn’t colic—it was neuro irritability.
As you navigate the uncertainty of the “wait and see” journey that comes with HIE, how are you finding ways to focus on hope and cherish the present moments with your baby?
We’re still learning and figuring this out, and it’s definitely a struggle. It’s hard, but we’re trying to take things day by day and focus on the positives. Little things, like when she turns her head toward a toy, has a good reflex, or even just spends some time awake and calm at the same time, mean so much to us—especially since she’s usually either sleeping or crying with no in-between.
As the holiday season approaches, do you have any favorite activities or family traditions you'd like to share?
This is our first Christmas in an actual house instead of an apartment, so we bought a Christmas tree and stockings, and our 5-year-old was so excited! One of our favorite traditions is driving around neighborhoods to look at Christmas lights and spending time together as a family. We’re hoping Marlee will be home for Christmas and might even get to meet more of 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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