By Maureen Gilmer, IU Health senior writer, email@example.com
The long days and nights are seared into Katie Kinnaird’s memory.
Eleven months, one week and six days.
Every holiday, every family birthday, every special event was celebrated within the confines of four hospital walls for nearly a full year.
That’s how long her little boy was at Riley Hospital for Children, first waiting for, then receiving, a new heart.
Caleb Kinnaird’s heart journey began well before that – actually the day he was born with tricuspid atresia in 2011. His parents, Katie and Daniel, learned at Caleb’s 20-week ultrasound that their son would be born with half of a functioning heart.
Doctors at another Indianapolis hospital managed his condition with surgery and medication for the first year of his life, but he was ultimately transferred to Riley when it was determined he would need a heart transplant.
The decline in his health happened literally almost overnight.
“WE’RE SENDING YOU TO RILEY”
On Halloween night 2012, little Caleb, dressed as a lion, was trick-or-treating, his grandmother, Cindy Cox, remembers. She recalls thinking then that his skin looked gray.
The next day, they called the doctor and brought Caleb to the hospital for a heart catheterization. He suffered cardiac arrest before they could even start the procedure, but doctors were able to revive him within a few minutes.
“That day, everything changed,” Cox said. “We had been on a path for three surgeries (Caleb had already had two), and they said then that he would need a new heart.”
“We’re sending you to Riley,” the New Castle family was told.
They arrived on the night of Nov. 1, 2012, and would remain until Oct. 13, 2013. Caleb, who was under the care of longtime Riley cardiologist Dr. Randy Caldwell (now retired), received his donor heart Sept. 25, 2013. Heart surgeons Dr. Mark Turrentine and Dr. Mark Rodefeld teamed up on the procedure.
Debbie Murphy served as transplant coordinator.
“She walked with us from the day we arrived at Riley to today,” Kinnaird said of Murphy. “She has been a constant thread in Caleb’s care.”
Eight-plus years later, Caleb is an active 11-year-old who loves making people laugh, his mom said. He recently sailed through his annual heart cath test, and it seemed appropriate to check in with the family this week for Congenital Heart Disease Awareness Week.
“We’ve had a great track record since he got his new heart,” Kinnaird said. “He is full of energy, full of life. He loves swimming, but his greatest passion is acting.”
The fifth-grader, a rough-and-tumble kid and a straight A student, recently landed the role of the wizard in his school’s spring production of “The Wizard of Oz.”
“He’s our little performer,” Kinnaird said. “He’s a hilarious kid.”
A year in the hospital can test a family, but the Kinnairds passed that test as well. It wasn’t luck; it was intentional.
“One thing that deeply transformed our family that year was learning how to have fun and be joyful and thankful no matter what,” Kinnaird said. “We spent every holiday and birthday in the hospital, and we had to learn how to make life work in a 15-by-15 hospital room.”
They refused to waste time being sad and moping around, she said, instead choosing to live life and be normal parents. That meant not feeling sorry for themselves and teaching Caleb not to feel sorry for himself.
“We chose to find joy and thankfulness. That was written into us as a family from that point on. That’s still the way we live,” said Kinnaird, a youth minister, writer and staunch advocate for organ donation.
During their year in the hospital, she wrote regularly in a blog, not really anticipating that many people other than friends and family would read it.
“PEOPLE HELD US UP”
“It started as a way to communicate efficiently, and it turned into this thing that thousands of people read,” she said. “It felt like the whole community was going through it with us. People were really connected to our story and to Caleb.”
Friends and strangers alike rallied around the family, preparing meals, mowing grass, helping with pets and donating gas cards.
“People pitched in and literally held us up, and God brought us through,” Cox said.
Because of a strong social media following, Kinnaird has felt a responsibility to speak up about organ donation and to talk about Riley, which is near and dear to her heart.
“I wish everyone knew just how fantastic a hospital Riley is. Most kids who have to wait so long for a heart don’t live. Our team was able to keep him stable for a very long time. The cardiologists and nurses are so fantastic that he never got an infection,” Kinnaird said.
“We think Riley has out-of-this-world care. They didn’t just care for Caleb, they cared for our whole family, and we just feel incredibly indebted to them for how much a part of our life they have been.”
As with any heart transplant patient, the future is uncertain. Caleb likely will need another heart in a few years, his mom said, but they refuse to allow that inevitability to steal their joy today.
No matter what happens, they are going to face it with that same joy in their hearts.
“There is always something to be thankful for,” Kinnaird said. “We have chosen to focus on that rather than on the things on our journey that are scary and unknown. That has helped keep our heads above water even in the most traumatic times.”
Learn more about organ donation at indianadonornetwork.org.