Posted on Feb 23,2017
The nasty cough persisted and kept getting worse, so 10-year-old Kayla’s family took her to a Tampa emergency room. Doctors thought she might have bronchitis and began treating her, but it continued to get worse for several days. They investigated whether Kayla’s medication might be causing problems. When Kayla’s pediatric cardiologist happened to show up for rounds and mentioned her father had died at age 31 of congestive heart failure, everything changed quickly.
They ordered more tests for Kayla.
They ordered an ambulance to rush her across the bay.
They arranged for doctors at Johns Hopkins All Children’s Hospital to be ready.
Within 24 hours, Kayla had a new heart.
“It happened so fast you couldn’t even process what was going on,” her mother, Gina, recalls of the emotional roller coaster. “We had thought she had bronchitis so she was being treated for that, but it got worse. Then we thought she was reacting to the medicine.”
“In 2016, Kayla developed severe cardiomyopathy, which is a severe disease of the heart muscle. She needed a new heart in order to live,” explains Jeff Jacobs, M.D., Kayla’s heart surgeon. Jacobs is chief of the Division of Cardiovascular Surgery and director of the Andrews/Daicoff Cardiovascular Program at Johns Hopkins All Children’s Heart Institute.
Taking the Tough Cases
Once relocated to Johns Hopkins All Children’s, doctors got to work on Kayla immediately. Gina was told her daughter needed a device that would keep Kayla’s heart pumping until a donor heart could be found. Her own heart sank as she once again recalled Gina’s father’s fate. “I had fought for that device for her dad. The things I had wanted for him, God was giving me for Kayla,” she recalls through tears.
“Because she was so sick,” Jacobs continues, “we planned to place an urgent left-ventricular assist device (LVAD,) which is an artificial heart pump designed to keep Kayla alive until a donor heart became available. Amazingly, we learned of a donor heart almost immediately, before we actually placed the LVAD. Kayla underwent transplantation and did great!
“Johns Hopkins All Children’s Hospital is the only hospital in Tampa Bay and Orlando that performs heart transplants on children,” Jacobs adds. “We have performed 176 heart transplants since 1995. Because of our extensive experience, we offer transplantation to many high risk patients who may not have the opportunity to undergo transplantation at lower volume programs. Patients like Kayla are why we do what we do.”
In addition to being one of the largest pediatric heart programs in the state, the hospital is recognized as a Top 50 Children’s Cardiology & Heart Surgery Program by U.S. News & World Report 2016-2017.
Kayla was out of the hospital in less than a month and she has been fortunate to have a huge support group outside her family, from friends to members of her church in Riverview. “They all know me there,” Kayla explains. “They keep checking on me. I missed church a lot when I was in the hospital.”
This February was Kayla’s first anniversary with her new heart which is efficiently doing all the work her old heart could not. Now 11, she just completed her annual heart biopsy—coincidentally on Valentine’s Day—and, her mother adds with a smile, she was removed from the dreaded “no roller coasters” list. This is big for Kayla. The family celebrated almost immediately with a weekend at Disney World. “We did Space Mountain,” Kayla says with a big smile. “Mom won’t get on. Her job is to hold the bottles of water and watch me go.”
With the emotional roller coasters behind them, this family couldn’t wait to enjoy the real thing.