Ellie McCabe of Fremont was recently selected to serve as a NH Youth Heart Ambassador during the coming school year. Her mother, Jessica, shared her story at the 2023 NH Heart Walk held on June 4th at Manchester’s Livingston Park.
Written by Jessica McCabe
Eight years ago, I never would have thought that our journey would take us here. My name is Jessica McCabe and this is my daughter, Ellie. Ellie is 7, almost 7.5 years old, and is finishing up 1st grade in Fremont. She has a younger sister, Kenzie, who is 3.
Our heart journey began in the fall of 2015, when we found out that there were some concerns about the heart of the baby that we were expecting just a few short months later. We learned soon after our 20-week ultrasound that our first child has Hypoplastic Left Heart Syndrome – essentially, the left half of her heart didn’t develop. We were told that this condition is not curable but treated with a series of 3 surgeries during the first years of life.
The first surgery was to be days after she was born. Needless to say, we were stunned, sad, scared and confused. We have no family history of heart defects and could not understand why this was happening to us. We soon met with cardiologists, both locally and in Boston to start to get a feel for what to expect in the coming months.
I will never forget when one of them told us “I wish I could show you your child when they’re 5.” While there were many unknowns, they were confident that after a few very difficult years, we would have a happy, healthy child.
It turns out, they were right. Ellie had her first open-heart surgery at just 3 days old: New Years Eve, 2015. Her 2nd surgery followed soon after at 5 months old. Life was good and smooth for a while. Eventually, at around 2 years old, she had to have unplanned surgery on her aorta that was stubborn and narrow. Her doctors wanted her to have the best shot with her final surgery and having her aorta repaired was part of that plan. Her last open-heart surgery was around the age of 3 and a half. We were overjoyed to hear that she was doing well following her last surgery. After a few more follow-up visits, we switched to yearly visits.
Every visit since then has shown that Ellie is stable and doing great. She continues to grow and be a happy, healthy kid. She loves to dance, swim, play with her puppy and sometimes with her little sister. She has done figure skating lessons and gymnastics lessons and doesn’t let her “special heart” slow her down too much. She loves raising money for the Kids Heart Challenge at her school and telling her teachers and classmates all about her special heart.
None of this would be possible without the money and research that went into developing these life-saving surgeries. Thank you so much for coming out to support the American Heart Association. We never knew our journey would take us here but we’re grateful that you’re a part of it.