These were the words repeated by the team at UF Health Shands Children’s Hospital Pediatric ICU as they cared for 13-year-old patient Maria Forbes.

After a weekend soccer tournament in February, Maria returned home to Ocala with a headache and exhaustion. Her parents, Dave and Vanessa Forbes, assumed she needed a day or two of rest. Maria was still feeling ill after a few days so they set up a doctor appointment, but they never made it to the appointment.

Vanessa noticed that her daughter’s fingers were turning purple. They rushed her to the E.R. at a nearby medical center. An X-ray revealed that Maria needed more specialized pediatric care, and she was flown to UF Health Shands Children’s Hospital.

Maria was admitted to our Pediatric ICU for severe acute respiratory distress syndrome and septic shock secondary to the flu and pneumonia. Her lungs began to fail, she had
low levels of oxygen in her blood and she was placed on conventional methods of life support.

Despite those efforts, Maria soon required extracorporeal membrane oxygenation, or ECMO, a technique that provides respiratory and cardiac support to patients with lungs that cannot provide the oxygen their bodies need.

Patients are usually on ECMO only for a few weeks, but Maria stayed on ECMO for 67 days, which is very rare. What makes her story even more remarkable is that she was neurologically intact during her therapy. Unlike most patients, Maria interacted with her family and the UF Health team while undergoing the ECMO treatment. Her providers even had her up and walking around.

“This certainly was a first for the PICU, and the first time I’ve ever had a patient have the stamina to be able to do that,” said Janice Taylor, M.D., UF College of Medicine pediatric surgeon.

Taylor ensured Maria and her family were well-informed and supported.

“Dr. Taylor was caring and positive and kept us up-to-date,” said Dave Forbes. “She always gave us hope. She’s been there for everything.”

Lindsay Sikora, M.D., a UF College of Medicine pediatric critical care intensivist, also was instrumental in lifting Maria’s spirits by arranging for her to receive an autographed jersey from U.K. soccer player Marcus Rashford of the Manchester United team, which was shipped to Maria from England. She also received autographs and personalized video messages from the Orlando Pride, Orlando’s professional women’s soccer team.

“During the course of Maria’s ECMO treatment, so many health care providers took part in her care,” said Timothy Bantle, R.R.T., ECMO coordinator. “The team refused to give up hope or succumb to pessimism. Everyone was giving their all in every aspect of the care provided.”

Amanda Bonaccorso, R.R.T., B.S.A., M.B.A., a UF Health ECMO specialist, worked night and day to ensure Maria received the care she needed and that she felt at home. When Maria’s parents would go home for the night, Bonaccorso looked after Maria, learning her music preferences, discussing her favorite TV shows and even painting her nails.

“I made it a priority to encourage her every time I managed the pump, to let her know what a fighter and inspiration she was to staff and physicians on the unit,” Bonaccorso said.

In the end, more than 30 health care team members — physicians, PICU nurses, the ECMO team, respiratory therapists, physical therapists and occupational therapists — supported Maria and her family.

Maria’s road to recovery has been long, but in October, after more than eight months in the hospital, she was discharged to a rehabilitation facility. While there, Maria worked with physical therapists and other rehab experts to continue gaining back her strength. After only a few weeks at the rehabilitation facility, Maria was discharged and is now doing well at home with her family.