Half a heart
Caleb Harris thriving after treatment for congenital heart defect
By April Frawley Birdwell
The I Promise initiative is about making every patient’s experience the best it can be. This month we recognize how nurses and doctors helped make a terrifying experience better for one family. For more information about I Promise, email firstname.lastname@example.org.
In the photo, she smiles, cradling her newborn son in the crook of her arm. Looking at the image now, Kim Harris sees the violet tinge to his wrinkly skin, a subtle hint that all was not well inside his six-pound body. At the time, she thought all newborns must look like that
That night Kim and her husband, Danny Harris, sent Caleb to the nursery so they could get some much-needed rest. The decision likely saved his life.
“They came in the room and said he wasn’t breathing,” Kim said. “Something was wrong with his heart.”
Just 16 hours old, Caleb was rushed from Ocala where he was born to Shands at UF, where doctors with UF’s Congenital Heart Center diagnosed him with hypoplastic right heart syndrome. The right side of his heart was not fully developed. Medicine kept his heart working, but doctors said the infant would need a heart transplant.
“I just cried,” Kim said. “I just remember being very scared because I did not think he was going to live to get a new heart.”
Caleb, born a few days before Christmas, spent the first four months of his life in Shands at UF, hooked to tubes and machines, undergoing open-heart surgery and countless tests. It wasn’t what Kim or Danny had in mind for their little boy. No one does.
“We had planned on having Christmas dinner here,” Danny said. “I had put a million lights up all around the house. When this happened, I said ‘I am going to keep all the lights up until he comes home.’ And I did.”
At the hospital, Kim, who stayed with Caleb when Danny went back to work, relied on the nurses in the NICU and PICU. They cried with her when she cried, hugged her when she needed it and took care of Caleb when she couldn’t be by his side.
“I would come in and I would see some of them just rocking him. It meant so much more. It felt like he had 20 moms,” Kim said.
Caleb underwent open-heart surgery when he was 3 months old, alleviating the immediate need for a heart transplant. A month later he was strong enough to go home.
Now 16 months old, Caleb is thriving. He has taken his first steps and loves Mickey Mouse and typical toddler mischief, like getting into kitchen cabinets.
She keeps in touch with several of the nurses she met and makes time for a visit or lunch when she and Caleb are in for doctor’s appointments.
“It makes us feel great. It makes us feel like what we do matters to parents, to the patients, to the families as a whole,” said Erin Murray, R.N., a nurse who cared for Caleb in the PICU.
Kim keeps Caleb’s cardiologist, F. Jay Fricker, M.D., chief of pediatric cardiology, on speed dial, too.
“I talk to Dr. Fricker a lot. We joke because now when I call he knows who I am. He knows me as ‘Kim’ now instead of ‘mom.’ He is great.”
Looking to the future, Kim and Danny’s dreams for Caleb are a lot simpler than they were when she was pregnant. She just really wants one thing for him.
“Now I just want him to be healthy,” she said. “I just want him to live a long, happy life.”