Caleb Kinnaird is full of life. It’s incredible, considering the 2-year-old is living with basically half a heart.
Caleb was born with tricuspid atresia. His heart is missing a key valve, meaning only half of his heart works.
His mother Katie remembers the day she first learned the news, weeks before Caleb’s birth.
“That day really changed our life forever,” she said. “We didn’t realize (it) then, (but) that was setting us on a course that we would never have expected.”
That course included a pair of open heart surgeries for Caleb. His treatment was on track until November, when his heart stopped.
“What we had to come to grips with was that he might die. That this might be the last day,” recalled Caleb’s father Daniel.
“We were scared to death. I remember we just sat in a little room and cried,” Katie said.
Now, Caleb’s only hope is to get a new heart.
Dr. Randal Caldwell—a physician with Riley Hospital for Children at Indiana University Health—said Caleb’s small size makes an already complicated procedure that much more challenging.
“The biggest thing is the heart size. If we take a normal newborn, the heart size is about the size of a strawberry, (and) you’re doing very tedious work,” he said.
To help her cope with it all, Katie started a blog called ‘Caleb’s Heart.’
“It became kind of therapeutic for me to write about it,” she explained.
The blog was also intended to help keep family members updated about Caleb’s condition. However, it soon became something else—a message of hope and inspiration for those reading it.
“A lot of people look at us and say, ‘I don’t understand how you’re doing that.’ I think people are encouraged to read that people can go through the worst of things, and still be okay,” Katie said.
‘Caleb’s Heart’ has been a place for Katie and Daniel to share the ups and downs of the ordeal, as well as the important role that their faith has played in it all.
It’s also the website, where one day soon, they hope to write the best entry of all—when Caleb finally gets his new heart.
“When I think about getting that call, which I really believe we will, it’s going to be the sweetest news we’ve ever heard,” Katie said.
“We’ll have a new little boy,” Daniel said. “There is nothing to compare to the joy that’s going to happen on that day.”
Caleb’s story brings more light to the need for organ donors. If you’re interested in becoming an organ donor, visit the website for the Indiana Organ Procurement Organization or the United Network of Organ Sharing.
You can also read the ‘Caleb’s Heart’ blog.