Watching a Barney DVD in her bed, Olivia Salinas looks like a typical preschooler, except for the tracheostomy tube in her neck.
But the 3-year-old girl from Tampa made history May 2, becoming the first child with Pompe disease in the world to have surgery to implant a diaphragm pacing system.
Saleem Islam, M.D., an associate professor of pediatric surgery in the College of Medicine, performed the procedure, which could help keep Olivia from being dependent on a ventilator. Pompe disease causes progressive muscle weakness, which can lead to respiratory failure in patients.
For her mother Michelle Ransom, the process has been filled with uncertainty. But the result has been worth it — Olivia is thriving.
“She’s in a lot of uncharted territory,” she said. “She’s doing a lot that has never been done before.”
A new procedure
In the pediatric intensive care unit at Shands Hospital for Children at UF just a couple weeks after her surgery, the little girl was already able to be off her ventilator for up to four-hour stretches. She smiled as she maneuvered herself in her tiny black wheelchair, decorated with pink curly ribbons, through the hospital hallways.
Olivia left the hospital at the end of May and is now off the ventilator all day, only using it when she naps or sleeps at night, Ransom said. Being off a ventilator has given Olivia the freedom to do the things she loves again.