LOUISVILLE, Ky. — In a seventh floor room at Norton Children's Hospital, you'll find Chloe Clark surrounded by hearts. They're on her bedsheets, hanging from the crib, and embroidered on her clothes.
But on a day often filled with love and heart-shaped candies, the only gift this Jeffersonville toddler needs is the heart her life depends on.
"She's so happy and fun. She's always just a joy to be around," Jay Clark, Chloe's dad said.
"You would not know that this kid is so sick if she wasn't in the hospital, hooked up IVs, and an NG tube. She's so lovable," Mackenzie Clark, Chloe's mom said.
In her short 18 months, Chloe's spent the last 300 days at the hospital.
"It's become our normal," her dad said. "She was born August 16, 2021, and she's only been home about 150 days of that."
The heart of the matter is this: Chloe needs a new heart. She was born with a congenital heart defect called Tricuspid Atresia, where the valve that controls blood flow on the right side of her heart doesn't form – creating a major obstacle for blood to reach the rest of her body.
Chloe's mom says that defect combined with even more complications, like Common AV Canal Defect, a Congenital Diaphragmatic Hernia (CDH) and a handful of surgeries to correct them has overloaded her heart passed the breaking point.
Chloe was listed on the registry for a heart transplant on August 5, 2022. She can't leave this hospital without one. Her parents have spent the past 7 months waiting for that call.
"She's always attached to an 8 foot strand of IV, so anywhere she goes, that has to go with her," Jay Clark said. "I have a little car here that I'll take her for laps around the unit."
The wait is long and yet no time can prepare her parents for the bitter-sweet reality of what's to come.
"It's a very complicated emotion knowing there's another family out there that has to lose their child in order for ours to have a happy full life, hopefully. It's something you can't put into words. I try to compartmentalize that," Jay Clark said.
Pediatric organ donation is a topic no one wants to talk about, especially when you've just lost a child.
"I would never wish that pain on somebody, and I'm so sorry. I really am sorry for the family that has to go through this. But if it's going to give my daughter a chance, and maybe 5, 6, or 7 more people too, which is why organ donation is so important," Mackenzie Clark said.
It's why the Clarks encourage every parent to have that discussion now, however uncomfortable it may be.
Close to 1,900 children are awaiting an organ transplant in the U.S. The gift from one donor could be the gift of 8 lives.
"That child would be a hero to every single family," Jay Clark said.
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