A Jefferson County student will spend this school year educating people about the importance of heart health while sharing her story of being born with a rare heart condition.
Rockport Heights Elementary School fourth grader Hannah Caputa, 10, of Arnold recently was named an American Heart Association local youth ambassador.
“I wanted to be a youth ambassador because I wanted to tell my story for all the other heart warriors that could not tell their story to the world,” Hannah said. “I think it’s important to tell my story because other heart warriors may not have a chance to tell theirs. I think it is important for people to understand how hard it can be to have a heart problem.”
Hannah underwent surgery when she was 5 to correct an anomalous right coronary artery. Dr. Manoj Parimi, a Mercy pediatric cardiologist, said ARCA occurs when the right coronary artery that supplies blood to the right side of the heart forms in an abnormal location.
Hannah will spend this school year raising awareness about the impact of heart disease and stroke; advocating for healthy habits and lifesaving skills like Hands-Only CPR; and helping students learn how to care for their hearts, minds and bodies through age-appropriate lessons and activities.
Madelyn Alexander, the Missouri marketing communications director for the American Heart Association, said Hannah is the only local youth heart ambassador in the St. Louis region and one of three in the state this school year. Hannah is one of about 190 youth heart ambassadors throughout the country.
“One of the cool things about Hannah’s story is she was the person who let her parents know something was going on (with her heart),” Alexander said. “That is a message we talk about: ‘When something doesn’t feel right, get it checked out.’
“We are all very impressed with her maturity as it relates to her condition. She participates in the Kids Heart Challenge and helps show kids that they are helping kids like them. Kids can see someone they can relate to who is about their age, and she helps show the importance of the funds they raise through the program that help kids like Hannah.”
Hannah’s heart
Annie Caputa, Hannah’s mother, said her family is familiar with congenital heart defects because Annie’s brother died as a baby due to a heart condition.
Despite the family’s medical history, Annie said it was a surprise when Hannah was diagnosed with ARCA.
“We truly thought her heart was OK,” said Annie, 38, who has two other children – Charlotte, 12, and Amelia, 7, with her husband, Tony, 38. “Hannah was actually the one who brought it to our attention. Around the age of 4, she began telling us that her heart ‘felt funny’ and was ‘beeping really fast.’”
Annie said Hannah underwent numerous tests, including computed tomography angiography scans, chest X-rays, electrocardiograms, Holter monitors, treadmill stress tests and echocardiograms.
Hannah’s parents consulted with specialists from St. Louis Children’s, Cardinal Glennon Children’s and Boston Children’s hospitals before determining surgery was required.
Parimi said ARCA occurs in less than 1 percent of people, and it is possible to detect the condition at birth. The condition may be fatal and is most commonly associated with athletes due to the pressure put on a heart during heightened physical activity.
He also said surgery is typically not performed until a child is 12 to 14 years old. The surgery typically corrects the condition, and patients have few if any complications after the procedure.
“If we notice at birth or 6 months, we don’t do surgery immediately,” he said “The earliest is around 5 to 8 years old. It is uncommon to have surgery that young. There would typically be something that caused concern or a family concern.”
Hannah underwent the corrective surgery in 2021 at Boston Children’s Hospital. Annie said the family chose that hospital due to its surgeons’ experience performing the procedure on children.
“There are a few hospitals in the country that know it pretty well – Boston, Stanford and Children’s Hospital of Philadelphia, those are the like the gold standard,” Annie said. “When we talked to the doctors at Cardinal Glennon and Boston, the amount of surgeries that they have done to repair this defect was like 10 here and over 100 in Boston. I don’t doubt the lack of care here; it was just trusting someone who has done the surgery hundreds of times versus 10 times.”
Hannah said she was terrified before surgery, and she clung to her mother before the procedure. She said the recovery process was long.
“It was really hard to walk again right after surgery, or even sitting in a recliner was really hard and painful,” she said. “It was kind of hard not being able to go to school, dance and gymnastics. My kindergarten teacher was so supportive, and when I went back to my other activities, they were patient with me.”
Unrestricted
Annie said Hannah is not restricted from any activities, although she does need to slow down or stop sometimes due to pain.
“It’s hard for her to stop and rest while everyone else keeps going,” Annie said. “It’s another reminder that, while she may look fine on the outside, she’s still carrying the invisible weight of everything she’s been through.”
Mary Grace Sims, Rockport Heights Elementary nurse, said Hannah handles her condition well and does not shy away from talking about it.
“Hannah is the most amazing little girl,” Sims said. “She goes through her daily life like a normal student, and she shares this wealth of information she has regarding her condition and heart disease in general. She just wants to share all of this information with the intent of making the world a better place by people knowing more.”
Hannah said her favorite parts of school are lunch and math class. She also enjoys dancing, which she has done since she was 3 and is a member of the competitive dance team at Studio C in Arnold.
“Dance is great because it not only keeps my heart healthy through exercise, but it also allows me to tell my story to others through movement,” she said.
Perfect choice
Sims said she could not think of a better local youth heart ambassador than Hannah.
“She has a wealth of information and a willingness to share information,” Sims said.
As an ambassador, Hannah said she has appeared in a video for the American Heart Association to promote the Kids Heart Challenge and will be featured in a video about hands-only CPR.
She plans to talk about her experience and share information with students at Rockport Heights and other elementary schools during the Kids Heart Challenge, a nationwide event the American Heart Association typically holds at schools in the spring to raise money for heart research.
“I look forward to talking at my school and maybe other schools about how important the Kids Heart Challenge is,” Hannah said. “These school fundraisers aren’t just about having fun or the prizes that you get, they are about saving a life.”
Annie said she is proud her daughter is a local youth ambassador, adding that it has been great to work with the American Heart Association.
“I think it’s incredibly important for Hannah to share her story,” Annie said. “Her heart journey has been a traumatic experience, not just for her but for our entire family. Seeing her now, choosing to tell her story in such a healthy and productive way, has been incredibly healing. It’s not just a way for her to process everything she’s been through; it’s a way to reclaim her strength and help others along the way.”