With nearly one in 110 babies in the U.S. born with a congenital heart defect, there’s a push in Chicago this week to raise awareness and funding for more research.
“It just means that your heart was born abnormally structured, and that it can take almost any form, as far as how severe it is,” said Dr. Kiona Allen, medical director of the Regenstein Cardiac Care Unit at Ann & Robert H. Lurie Children's Hospital of Chicago.
For some, the condition can be fatal. For others, there are surgical repairs or medications that can help.
“Because the conditions are so diverse, we need a lot of funding to be able to explore all the different ways that you might help these children,” Allen said.
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Dr. Allen notes pediatric cardiac disease is 60 times more common than childhood cancer, yet funding for pediatric cancer research is five times higher.
“There's still a lot of work that needs to be done. There are families that aren't as lucky as we are,” said Tiffanie Jeffrey from Huntley. Her son, Dylan, was born with a congenital heart defect.
The Jeffrey family was unaware of Dylan’s improperly formed heart until he collapsed one day while practicing the violin for his father in August of 2020.
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“I got, like, a blurry vision. And then I started seeing, like, white circles. And then, like, I passed out,” Dylan said.
Nine years old at the time, Dylan was rushed to the emergency room. Numerous tests soon detected Dylan had an anomalous left coronary artery defect.
“His left coronary artery was routed incorrectly, so it was actually wrapped around his heart. So as his heart would expand, especially when he would increase activity, it would expand more and it would put pressure on that artery, causing it to cut off the blood circulation to the right side of his body,” Tiffanie Jeffrey said.
Dylan underwent surgery to fix the issue. Now age 12, his heart is pumping normally, but that isn’t always the case for children with congenital heart defects.
That’s why Dylan and his family are taking part in The Children’s Heart Foundation Congenital Heart Walk on Saturday, June 10, 2023, in Lincoln Park.
Registration is underway, but the mission of The Children’s Heart Foundation is about more than fundraising.
“It's so important to the families that they learn that they're not alone on this journey. And that there's other families going through the same thing. And that community that The Children's Heart Foundation builds is almost as important as the research funding itself,” Allen said.
“We are getting more and more families that are coming out and identifying that it isn't just us,” said Tiffanie Jeffrey, who is a co-chair of the Heart Walk and will also serve as the emcee on Saturday.
She wanted to share Dylan’s story to help other families. She says there were signs of trouble before his collapse.
“When I was running, like I would get tired way easier than I used to be when I was younger,” said Dylan.
“He was telling us, ‘Mom, Dad, I'm having chest pains.’ So the biggest thing that I can say to families is listen to your children. If they say something isn't quite right, go and find out about it. And don't stop at the first person that tells you that nothing is wrong. Keep pushing to find it,” Jeffrey said.
