To many, the thought of having a severe disability is unfathomable. But for others, this harsh reality will forever be a huge piece of them and their story. For junior Juliana Duperval, her diagnosis of Congenital Heart Defect (CHD) deems her heart imperfect, but she lives the life that was meant for her and uses it to help others along the way.
At just eight months old, Duperval’s mom was told that her baby daughter had CHD: an abnormality in the heart that develops before birth.
Despite the millions of babies that are born with CHD each year, Duperval was unique to the doctors at Joe DiMaggio Children’s Hospital: nobody else at the hospital had as many symptoms as her—especially not ones who were as stable as she was.
According to Duperval, her symptoms to this day are: “[An] abnormal heartbeat; an indentation on my right pulmonary artery; an absence of my left pulmonary artery, causing my left lung to not work at all; an indentation on my aortic arch, and a vascular ring wrapped around my esophagus.’” Despite having these abnormalities in her cardiac system, Duperval was not diagnosed until 10 months old.
After growing up and learning more about her diagnosis, Duperval never felt different from her peers for what she had. “My mother shaped my views towards my defect because she never made it seem like something was wrong with me.”
However, over the years, Duperval had to get 16 surgeries because of her CHD: two open heart surgeries, 13 cardiac catheterizations, and a tonsil removal because she would stop breathing at night. This took a toll on Duperval and made her realize she was not the same as everyone else: “I realized not everyone had a scar on their chest like me. That’s crucial to [my] story: finding out people do not have a zipline [scar] on their chest.”
For a child, having a support system while going through something difficult is essential. Duperval states her main ones are her mother and God. “My mom always [tells] me to keep my heart set on God’s plan because he always has a plan and that helped me a lot.”
Duperval currently has a stent—a mesh metal tube that bonds arteries—all over her cardiac system.
As Duperval navigates life with this condition, she feels proud that she has made it so far. “I know it’s going to make me better.”
Although she is lucky, Duperval still remembers all the children who are affected by this disease. “I remember I told my mom [that] I felt sad that kids with only one of my symptoms were in the hospital for their whole lives. I was so upset that kids had to go through that especially when I had way more wrong, and I got to walk free. I think they deserve the world, and I wanted to be the one to give it to them.” She continues, “I learned throughout my life to give back to kids who have it worse than I do because that’s what God called me to do.”
To give back, Duperval started an organization when she was three to give back to the Cardiac unit at the Children’s Hospital. She has also been featured as a special guest at fundraising banquets for Joe DiMaggio and has spoken on KISS COUNTRY 99.9 and iHeart Radio to spread awareness about cardiac diseases.
This life experience also guided a path to help Duperval figure out what she wanted to do in life. Duperval plans to either work in the Child Life specialist field or go into marketing. “Marketing for a company I’ve been working with for years would help get outreach for things people may not know about [like] cardiac health, so I think that’s great. That’s my dream job!”
In the end, from CHD patient to CHD patient, one thing Duperval hopes to tell others affected by the disease is: “To just keep going. Don’t let this mishap define who you are as an individual. If you do, let it define you, let it define you as a heart hero because heart heroes do much, much more than regular superheroes. I think heart patients need to have that positive influence to feel better in their skin.”
This story was originally published on CHAT News on September 16, 2024.
