November 10, 2025 | Categories: Health
“This Woman Was Born With a Congenital Heart Defect and Creates Awareness for Children’s Heart Conditions”
If you saw a smiling 35 year-old Ellie Wilhelm running by during a half or full marathon, you would never think this strong athlete was born with a heart condition and is running with a pacemaker. Wilhelm was born in Columbus, Ohio with congenital heart defect that led to three holes in her heart by age four. She had an invasive, open-heart surgery before age five to close the holes.
FROM BIRTH, Wilhelm had regular checkups and her doctors discovered she had atrial-ventricular septal defect—three holes. As a result of surgery, she developed mitral valve heart block, with10 percent block on one side and a complete (100 percent) block on the other side. It was at that time, age 12, that she got a pacemaker put in to help remind the RIGHT side to function properly. She’s had one ever since and received her most recent pacemaker about one year ago.
“I loved playing sports as a kid, but, as I got into middle school AND high school, I developed a lot of anxiety around exercise,” she said. “I think a lot of that had to do with just not having my heart working properly.”
Finding Her Tribe
Wilhelm always enjoyed running and did it to stay in shape over the years as a teen and young adult. After moving to St. Louis, Missouri, for her husband’s job Columbus, Wilhelm decided to join a running club in her community for something to do and as a way to meet new people. “I started off running a full mile and then running three miles without stopping and eventually, I caught the bug and started running half marathons.”
After she had a few half marathons under her belt, Wilhelm realized SHE wasn’t making any progress with her times. “I couldn’t get myself to sprint faster or do longer workouts without taking breaks.” Eventually, she had a conversation with her electrophysiologist about not feeling well while running. He decided to look at her pacemaker settings and realized that they were set to limit her as if she were a 65-year-old person at rest. Now she knew why she wasn’t able to run faster. “After he adjusted my pacemaker settings, I left the office and went on a 40-minute, four mile run. It was the fastest I’d ever run and I felt physically great afterwards.”
Now that she was feeling better with her updated pacemaker, Wilhelm set her heart on running marathons. “I wanted to see how far I could take it. Doing this was almost going to be like the ultimate proof to myself that I could do what I put my mind to.”
“I’m always figuring out lifetime care, often without a lot of modeling,” said Wilhelm. “I don’t know a lot of women with congenital heart defects. I don’t know many who have children.”
These days, the married, Cincinnati-based social worker and mom of a toddler runs to raise money for charities associated with children’s heart conditions.
Wilhelm is part of the Ironheart Foundation and has run half marathons and marathons to raise funding for them as part of a “One in a Hundred” campaign, honoring the 1 in 100 born with congenital heart DEFECTS. SHE HAS BEEN SUPPORTING THIS ORGANIZATION SINCE 2011. Funding of this charity supports multiple causes and provides a forum for adults with heart defects to share their stories and engage in athletic endeavors for this cause. “It’s an international group of adults with congenital heart defects who do athletic endeavors and connect online. It’s been a fun organization to be a part of and run on behalf of,” said Wilhelm.
“I’m also part of a Facebook group that I got linked to when I lived St. Louis. I’m kind of like the ‘adult child’ with heart block for a group of parents of kids with heart blocks.”
I have personally benefited from having a family with resources, a supportive community, and critical research to continue to live my life to the fullest. It is my responsibility to share the wealth with others. One of the easiest ways is to give as much of myself as I can to the organizations working hard to make things better for kids and adults with CHD. Running for a cause is a great way to not just raise awareness, but get dollars where they need to go.
Most recently, Wilhelm ran her fourth full marathon, the NYC Marathon in early November. It was her first marathon since giving birth to her daughter, Clara, about 18 months ago.
Wilhelm trains for marathons by racking up about 30 miles a week, doing at least one day of cross training by cycling, adding a day or two of strength training, and incorporating yoga for a balanced routine.
This article was originally published on Reebok’s blog.
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