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Kansas City mother, daughter raise awareness for congenital heart defects

Caroline, Trish and Gracyn look through the pictures from when Gracyn had surgery.
Posted at 4:30 PM, Feb 29, 2024

KANSAS CITY, Mo. — Trish Lamley has pictures of her daughter, Gracyn Lamley, from 2012. That's when Gracyn was two years old.

What should be a fun time is a hard one to look back on.

"At two-years-old, that’s when she was diagnosed with a congenital heart," Trish said.

Trish Lamley and her daughter, Gracyn.

A few months later, Gracyn went through heart surgery. Trish calls that time "awful."

"I didn’t know til she was two, and I’m a cardiac nurse," Trish said. "So I kept wondering, 'What did I miss?'"

It's something that can be easily missed.

Up until 2011 when Chloe's Law passed, it wasn't required for newborns to get tests or screenings looking for a congenital heart defect.

The American Heart Association said almost one in 100 babies are born with this.

It's so common, in fact, there's a Kansas City organization that rallies around those patients and their families.

"I’ve honestly stopped keeping track of how many care packages we’ve delivered," said Valerie Rexin, the co-founder of CHD Families said.

Rexin lost her son to a complex congenital heart defect in 2001.

She helped create this group so no one has to go through any part of the process alone, something she wished she had.

"We can connect with them up front, they can meet other families, they can ask their questions," Rexin said.

They make care packages for Children's Mercy patients who are having heart surgery. It includes toiletries, activities, coloring books, and a homemade blanket.

Gracyn keeps the one she got from CHD Families over 10 years ago.

Valerie Rexin, co-founder of CHD Families

Today, Gracyn is free to be a normal teenager.

"I play lots of sports, like nothing really gets in the way of it or anything, I don’t have to worry about it," Gracyn said. "Most of the time I just, like, forget about it."

The Lamley's keep the blanket and the photos are reminders of that time, and how grateful they are.

"I don’t think we took things for granted before, but we for sure don’t take things for granted now," Trish said.