LOUISA COUNTY, Va. -- Being brave runs in the Martin family's blood.
Mom Kelly Martin had to be when she found out her daughter, Lilly, who hadn't even been born yet, may never live a normal life.
"They told me, it's a girl," Martin said, remembering when she was getting an ultrasound in 2020. Minutes later, an ultrasound technician asked if Martin had any kind of genetic testing done.
"The doctor said, 'We're seeing abnormalities with your daughter's heart,'" Martin recounted. "This delivery is going to be very different than with your son. You might have to deliver somewhere else. She might need open-heart surgery immediately. There's a lot of unknowns.'"
Lilly was diagnosed with a congenital heart defect, preventing her heart from being perfectly formed.
Despite genetic testing and seeing nearly a dozen specialists for a slew of health problems that came after she was born, Martin still doesn't have answers as to why her daughter was born with one, but her older son was not.
"We don't know why she was born with a heart defect," Martin said. "That's the way she was created."
According to the American Heart Association, nearly one in every 100 children in the U.S. will be diagnosed with a congenital heart defect. About a quarter of them will need some kind of intervention, like open-heart surgery. Like Lilly would have at just nine months old.
"I'd looked at pictures of kids right after heart surgery to kind of prepare myself, but nothing prepares you for when it's your child laying in that bed," Martin said.
The 8-hour surgery, which took place in Washington, D.C., was a success.
Now, three-year-old Lilly is lively, always running to her room to play and read.
"She doesn't have any restrictions, no medications, she is just a three-year-old. She's just our three-year-old Lilly," Martin said. "That if you didn't see her scars, you'd never know what she'd gone through."
Lilly does live with two heart murmurs and may need a pacemaker later on.
Still, Martin says this life now, with an otherwise healthy little girl, is not one she could've imagined.
"If you had asked us when I was pregnant with her if I thought we'd get to this point, I would've said no. I didn't think we're ever going to live a normal life and get through any of it, and here we are," Martin said.
Martin credits quick-acting cardiologists and an early surgery for Lilly's survival.
"The uncertainty and the not knowing was scary," Martin said. "But looking back now, it was just a short period of time in retrospect to the life she's going to live."
Congenital Heart Defect Awareness Week is each year from Feb. 7 to 14. Lilly's journey represents just one of countless stories from families learning how to navigate raising a child living with a heart defect in addition to spreading awareness, providing support, and understanding the risk factors of heart defects.
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