Name: Jacob Thompson
Location: Indiana, United States
Child's Birth Year: 2018
Keywords: HIE Dad, Navigating Divorce
Before his HIE daughter, Ellie, was born in February of 2018, Jacob and his then wife had been happily married for a few years. Everything went smoothly during the pregnancy, and they were both excited to have their first child together. But during the delivery process, Ellie unexpectedly had an HIE event. It was suspected to be due to the cord being wrapped around her neck, although the doctors weren’t sure what exactly happened.
For the first day of Ellie’s life, no one even noticed that something was seriously wrong. The providers just gave her to Jacob and his wife to hold and take care of like it had been a completely typical birth. At first, when Ellie’s mother noticed signs that Ellie was in distress, such as labored breathing, Jacob thought she was overreacting. After all, if the physicians weren’t concerned, didn’t that mean Ellie was in good health?
But as the night after Ellie’s birth progressed, Jacob noticed those signs, too, and it was at that point that he stepped in. He demanded that someone take their concerns seriously and monitor Ellie’s vitals. Jacob and his wife’s fears were confirmed—as soon as Ellie was checked out, she was rushed down to the NICU.
During the four weeks Ellie was in the NICU, Jacob tried to hold it together as best as he could, but he felt so lost and confused. As a parent, he felt helpless—he wanted to protect Ellie and make sure she had access to all the best opportunities and care, but how could he do that when no one could explain what exactly was wrong? Not only was there an ocean of uncertainty surrounding why the HIE happened in the first place, but there was so much uncertainty regarding Ellie’s future. Through this journey, Jacob learned to accept that while he might never get definitive answers, he can still try his best to work with the bits and pieces of information he is given.
After Ellie had an MRI, the doctors said that the part of her brain that was most damaged included the visual cortex, so she might never be able to see. They also told Jacob and Ellie’s mother that Ellie might never be able to walk or talk and that she might develop cerebral palsy. Hearing that news was heartbreaking. Jacob grew up racing cars, and he had always envisioned teaching his daughters how to drive. He could so clearly picture himself sitting in the passenger seat, experiencing the simultaneous thoughts of “Oh no, will I make it out of this car alive?” and “Wow, I can’t believe my baby girl is already driving. It seems like just yesterday she was in diapers.” To know that he might potentially not have these future bonding moments with Ellie was tough to accept.
But despite receiving this devastating news, Jacob is grateful for the support he received during those early days. The NICU nurses and hospital staff did anything and everything they could to make the experience as comfortable as possible. Because Ellie was born while the Daytona 500, a NASCAR Cup Series motor race, was happening, they let Jacob set up a TV in the hospital room so he could introduce Ellie to the sport he loves. To this day, Ellie is super excited any time she sees a race car on TV, even if it’s just because she is fascinated by the colorful paint schemes of the cars.
In addition, Jacob’s paternity leave only lasted for two weeks, so he worked full time during the final two weeks of Ellie’s NICU stay. The NICU staff were super accommodating, creating partitions so Jacob had his own little space to work remotely. He is also extremely grateful for his friends and family, who rallied behind Ellie and tried to help her out to the best of their abilities.
When Ellie was finally discharged, it was terrifying going home after being painted such a vague picture. Jacob felt like no one understood the unique struggles he faced as the father of a child with HIE, and to make matters even more difficult, Jacob was simultaneously navigating a complicated divorce process and recovery from alcohol addiction.
Then, a few months after Ellie was born, Jacob discovered Hope for HIE. Once he was accepted into the HIE Dads page, he found a community of people who understood just how hard it was to live in constant uncertainty. He found a community of people who understood how life could change so drastically in a matter of seconds. Jacob wishes he had found the group earlier in his journey, but he’s just thankful for coming across it eventually. By connecting with other dads via direct message, Jacob realized he was not alone, and that, if other parents all over the world could endure these challenges, so could he.
As the years have passed, Ellie continues to surpass all the expectations. She has trouble with her peripheral vision, but she can walk, as well as talk for what seems like hours on end. Jacob likes to joke that Ellie is his daughter through and through—like him, she is a true daredevil. She wears leg braces, but that doesn’t stop her from moving around. In fact, if Jacob turns his head for even a second, Ellie will already be on the other side of the house.
Overall, she is truly a free spirit, jumping off platforms on the playground and splashing around in the inflatable pool for hours at a time. Throughout this journey, Jacob has learned that Ellie will grow at her own pace and learn who she is by immersing herself in different experiences. Jacob never wants to let his own fears get in the way of Ellie living her best life. Free spirits like Ellie truly cannot be captured or confined—they’re out there, roaming free, exploring the vast wonders of the world.
Through all the struggles Jacob has encountered, he is still fueled by hope. For him, his initial hope of eventually teaching Ellie how to drive remains intact. If he needs to make a few adaptations to the car to accommodate Ellie’s disabilities, then so be it. To other HIE parents who want certain experiences with their children—whether that is playing baseball or riding a bike—Jacob would tell them not to work around their child’s disabilities but to work with their child’s disabilities. Acknowledge that, while a child with various disabilities may not be able to do the activity in the traditional sense, that doesn’t necessarily mean they cannot do it at all. As a parent, you just might need to be proactive in identifying the necessary modifications. Jacob hopes that, as the world continues to make strides in improving accessibility, more and more children with disabilities will have the opportunity to be included in various activities.
Jacob knows there will continue to be both good days and bad days. There will be days when Ellie gets upset and isn’t able to walk as well, tripping and falling down more than usual. There will be days when Ellie is the free spirit Jacob knows her to be, swinging joyfully on the swings or splashing around happily in the pool. Through both the good and the bad, Jacob will remember to find that balance between stepping in when he needs to, but also giving Ellie the freedom to sometimes fall down on her own, so she can learn how to bounce back up.
And eventually, Jacob will teach his daredevil daughter how to do the thing that has brought him so much joy in his own life—drive a car.
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