Story by: Joe Hall on February 1, 2018
When most people see Emily and Ethan Byler holding their stuffed animals, they don’t think anything of it. But if you stop and listen, there’s something special about Emily’s bear, Jessie, and Ethan’s dog, Gracie. Inside those furry frames is their baby sister Eva’s delicate heartbeat.
Emily, 5, and Ethan, 4, dreamed of the day they would have a little sister. When they found out their mom, Elizabeth, was pregnant, they were so excited.
“They couldn’t wait to hold her,” Elizabeth said.
But that excitement took a turn when Eva was born last February. Doctors diagnosed her with cardiomyopathy and a hole in her heart.
“Cardiomyopathy is when you have an abnormal heart muscle, which keeps the heart from either squeezing or relaxing properly,” said Joshua Sparks, M.D., cardiologist with the Norton Children’s Heart Center and University of Louisville Physicians. “This can lead to heart failure. It’s a very serious condition.”
Eva needed a transplant.
Unfortunately, the Bylers are no strangers to heart conditions. It runs in the family. Ethan received a transplant at Norton Children’s Hospital two years ago, and Emily could need one down the road. Eva is still waiting for her new heart. The now 1-year-old has been at Norton Children’s Hospital since September.
To make matters more difficult, the family lives in Munfordville, Kentucky, about an hour south of Louisville. And because Ethan is still recovering from his heart transplant, he rarely sees his baby sister.
READ MORE: No one watching Ethan play would know he had a heart transplant.
“It’s been really hard on the whole family,” Elizabeth said. “Emily and Ethan really miss Eva.”
That’s when Jessie Gordon, a child life therapist at Norton Children’s Hospital, had an idea. The hospital offers to record heartbeats of heart and cancer patients and place the sound in teddy bears. Many times, they’re given to the patients themselves or families after a child has passed. But this seemed like a good opportunity to bring the Byler family together during a very difficult time.
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“I thought since Emily and Ethan couldn’t hold their sister like they wanted to, they could at least hold a part of her,” Gordon said.
Gordon recorded Eva’s heartbeat using a stethoscope with a microphone. She then uploaded the beat into sound boxes, which were inserted into Gracie the dog and Jessie the bear.
Elizabeth recalled when they got the stuffed animals.
“Emily and Ethan were running down the halls with excitement,” she said. “Hearing their sister’s heart made their faces light up. I hadn’t seen them so happy in a long time.”
While it might not be the same as having Eva home, the special toys have helped the family cope with the distance.
“Emily and Ethan fall asleep in the comfort of the animals every night,” Elizabeth said. “They feel like they’re holding their baby sister. Even both their grandmothers asked for — and received — stuffed animals of their own.”
As the wait for Eva’s new heart continues, Elizabeth longs for the days when they can all truly be together again. In the meantime, the animals with that tiny little heartbeat are helping push through the road ahead. They’re a sign of hope, a symbol of love and a reminder of a baby sister who can’t wait to be held.
“It means the world to us,” Elizabeth said. “Regardless of what the future holds, Eva is a miracle — she makes our family whole. Gracie and Jessie will always be a reminder of that.”