Unexpected Diagnosis Leads to 96-Day Wait for a New Heart

  • February 6, 2020

When Kaleb was born, he passed his newborn screening with flying colors. His mom, Marissa, had a normal pregnancy and delivery, but when Kaleb was just three months old, he became fussy, sleepless and stopped eating during a weekend family getaway to Savannah. Marissa says she knew something was just not right with her baby, and after returning home early, she took him to urgent care. After an abnormal EKG, Kaleb was immediately life-flighted to Children’s Healthcare of Atlanta at Egleston.

“We were very surprised,” Marissa said. “We had to drive to meet the life-flight at the hospital, and even on the way, I just kept thinking it had to be a mistake and the EKG would be okay when we got there. We had no idea we would get that kind of news.”

The news that Kaleb had dilated cardiomyopathy with left ventricular non-compaction came as a shock to Marissa and husband Kale, and it was closely followed by the news that he would need a heart transplant. They waited 96 days in the hospital for a new heart.

Chad Mao, MD, Medical Director of the Advanced Cardiac Therapies program, has been with the family since the beginning of their heart journey. Marissa said he is their “go to” with anything concerning Kaleb.

“We knew if Chad was worried, we would be worried,” Marissa said. “Anything that goes on with Kaleb, even now, we ask to speak to him. He knows him.”

Marissa says that the excellent communication from the staff and the supportive heart community are two things that made waiting for Kaleb’s new heart more bearable. They made his hospital room their home for three months, and their regular nurse, Sara, was there on her last day to accompany Kaleb on his journey to receive his new heart.

That was very special, and it meant a lot to us,” Marissa said. “Everyone at Sibley has been amazing.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.