A Little Heart Warrior with a Big, Bright Smile
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Inspiration Spotlight
Meet Jae
Tell us about your heart warrior!
The following is from Jae’s mom, Brin: Our heart warrior is Jae Engelhardt! He was diagnosed after our 20 week anatomy scan with Double Inlet Left Ventricle (DILV), heterotaxy (his liver is on the opposite side of this abdomen), and asplenia (the absence of his entire spleen causing a suppressed immune system). Jae spent 3 months in the cardiac intensive care unit at Cincinnati Children’s Hospital starting in January 2024 after his birth and had multiple cardiac cath procedures during his stay. Jae was finally able to come home for a couple of months and then had his first open heart surgery, the Glenn, in July 2024. He will have another open heart surgery, the Fontan, in 2 years or so. Jae is absolutely thriving! He loves to explore and is curious about anything and everything. Jae is always on the move and just loves to love everyone. He always has a smile on his face despite everything he’s been through so early on in life. He’s the coolest guy we know!
What is your favorite way to connect with the Heart Community?
I love that through CHAoC, we have the opportunity to meet so many other heart families at so many events throughout the year. During our stay in the CICU, within the week of giving birth to Jae and starting our stay in the CICU, another mom and her brand new baby began their stay in the room next door to us. During our stay there were so many times I had wanted to stop at say hi to her, but timing never worked out. A year and a half later at the CHAoC 5k at Miami Whitewater, a woman stopped me to say hi. It was that mom! We were finally able to connect and that happened because of CHAoC putting on events for heart families.
Fore new parents and family members just starting their journey with CHD, do you have any advice?
Take each day as it comes. Before our son’s diagnosis and our journey with CHD started, I was always planning out as much as possible and always “go, go, go.” After our son was born, it taught me to take one day at a time, to enjoy all the moments no matter how mundane they seem, and to celebrate even the smallest milestone.
Are there any quotes or mantras that you live by?
Let go and let God.
