STRONGSVILLE, Ohio — This week is Congenital Heart Defect Awareness Week. About one in 100 babies is born with a congenital heart defect, making it the most common birth defect.
While treatments have improved, early detection and awareness can save lives. For Ivan Bakhtiar, heart health is personal. The fifth grader has a family history of congenital heart defects, and his Mom, Danette, worried about him and his twin sister even before they were born.
"Ivan is third generation heart defect patient, but the first to survive. My oldest sister had a hole in her heart when she was born. She passed away when she was four months old," said Danette Kubanda, Ivan's Mom.
Moments after he was born in Nashville, Tennessee, Ivan needed emergency heart surgery. Separated from his Mom and twin, he was rushed by ambulance more than two hours away.
"Ivan has a form of congenital heart disease, it's called total anomalous pulmonary venous return, so he has had surgery, and he is doing very well," said Dr. Carolyn Wilhelm, pediatric cardiologist, Rainbow Babies and Children's Hospital.
Thanks to a successful surgery and advanced care, Ivan recovered well. Now, under the care of Wilhelm, he's thriving.
"Ivan's heart, though, is very special, so his form of congenital heart disease is much rarer, so it represents about 1% of congenital heart disease," said Wilhelm.
At his young age, Ivan is already making a difference for other kids as an ambassador for the American Heart Association.
"He said, 'Well, yeah, if it's going to help other kids, I might be able to share something that somebody doesn't know,' which made it an immediate yes for him. I am so proud," said Kubanda.
Ivan is an ambassador for the American Heart Association's Kids Heart Challenge, sharing his story with other children.
"They didn't know that I had this heart defect. They were surprised at first because they didn't even know," said Ivan.
The Kids Heart Challenge is a school-based program for students K-5 that promotes physical and emotional health while raising funds to help fight heart disease and stroke. It features interactive educational activities like learning CPR, stroke recognition, nutrition lessons, and more.
"Maybe a preschooler can't physically do hands-only CPR, but by learning the steps, they can very easily walk someone through it. And just by them knowing what to do, it makes such a huge difference when they can say, 'Hey mom, I know what you need to do, we need to call 911, and we need to push hard and fast,' and it can save lives," said Angela Spicer Bonham, School Engagement Director, American Heart Association.
"During the assembly, I told the kids in school how they could take care of their hearts by eating healthy foods, staying active, and being well rested," said Ivan.
"We do stop, drop, and roll in schools all the time, right, and it's the same kind of thing. If we can just reinstall those special skills, it can save lives," said Bonham.
From a fragile start to a fifth grader raising awareness, Ivan is showing that taking care of your heart and helping others can make a real difference.
"I get to tell a lot of people that they can take care of their own hearts so they can stay healthy like me, so it means a lot," said Ivan.
Rainbow Babies and Children's Hospital said congenital heart defects are often found before birth, making treatment easier. In Ohio, all newborns are screened for heart defects before leaving the hospital.
