PERRYSBURG, Ohio — Congenital heart disease is the term for a range of birth defects affecting how the heart works. There’s no cure, but it can be survivable.
This week is Congenital Heart Disease Awareness week. It's the most common birth defect and nine in every 1,000 babies will be born with it.
Congenital heart disease affects blood flow through the heart.
For the Moser family in Perrysburg, it meant a reset in life priorities.
Chloe Moser will be five years old later this month. She loves to play with her unicorns, dolls and her little brother Connor.
She was two and a half months old when life threw a curve ball at the Moser family.
“Looking back five years later, when she was diagnosed and the cardiologist told us... all I remember them saying is something’s wrong with her heart and she’s having surgery," said Chloe's mom, Casey Moser.
“What we thought was a simple fix turned into a lifelong journey for us,” said John Moser, Chloe's dad.
The diagnosis was congenital heart disease (CHD). Since birth, Chloe has had three open heart surgeries, two heart catheterization procedures and a lot of trips to hospitals and doctors.
The Mosers keep a photo album, keeping track of trips to Mott Children's Hospital in Ann Arbor and the people they’ve met along the way.
“What do we do when we go to see doctor Morse? What do they do?" Casey asks Chloe.
"Give me an echo," Chloe replies, referring to an echocardiogram test.
"What's that for?"
"It makes it so your heart feels good.”
Chloe has four defects on the left side of her heart. Two have been repaired.
“But her main problems are around her main aortic valve. But she has a bicuspid valve that has two leaflets instead of three and until its replaced, eventually it’s going to fail," explained Casey. "Like it’s getting us by, but it’s not fundamentally right to begin with and she has narrowing above and below, and so that whole area is trash pretty much.”
As she gets older, maybe stem cell treatment can help Chloe’s heart repair itself. Or eventually, she’ll need a transplant.
“If you see her today she goes to preschool at Otsego, you see her on the playground, she’s keeping up with everyone. She likes to be in charge of everyone as the leader. She’ll be a good advocate for CHD for the rest of her life," said John.
Last week, the Wood County commissioners declared CHD Awareness Week. Perrysburg and Bowling Green followed.
It's a mission for the Moser family, building support network in northwest Ohio.
As a parent you never know what’s coming. Live day by day, hope for a happy ending.
“We’ve been getting by so they’re trying to just let her grow," said Casey. "She tolerates everything and it's going well.. so we’re pretty much on God’s timeline."
Casey is social media director for Conquering CHD-Ohio, just one way the Mosers are helping support kids like Chloe and their families navigate a difficult disease.