“Mommy, there’s a bump on the back of my head that hurts and I don’t feel well.” This simple statement from Nora was the start of a life-threatening experience for the Mayes family. After traveling from Indiana to Florida for a Fourth of July family holiday at the beach, young 8-year-old Nora began feeling ill.
Through two trips to urgent care, Laura, Nora’s mom, was told her daughter had an infected hair follicle. Seeking better care for their daughter, the family decided to go to an Emergency Room at a nearby hospital on the coast. Again, their concerns about their daughter’s health were unheard. Nora was discharged and the family was instructed to have her rest, drink fluids and let the illness pass.
Laura had a suspicion Nora may have experienced a tick bite at an outdoor day camp. She shared this with the medical team each time they sought help. On their second visit to the Emergency Room, Nora had become even more ill. Laura recalls, “By the time we got to the ER, there were people in the waiting room who were nervous for her.” This time she was given life-sustaining measures for septic shock and respiratory failure, and then transferred to Orlando Health Arnold Palmer Hospital for Children for specialty care.
Nora arrived at Orlando Health Arnold Palmer lethargic, weak, feverish and delirious. She was sent immediately to the Pediatric Intensive Care Unit, where the sickest children at the hospital receive treatment. Parents Laura and Nick described this time without a diagnosis as terrifying. Laura recalls, “There was a day I went back to the Ronald McDonald house where I screamed and cried because I wasn’t sure what would happen to her. And seeing Nick cry scared the tar out of me.” They felt helpless and feared for Nora’s life. “As parents, you never think this could happen to your child,” they said.
The care team listened to Laura’s suspicions and discovered Nora had ehrlichiosis, a type of illness that develops from a tick bite. If caught and treated early, recovery from ehrlichiosis can be swift. Nora’s medical team felt she would drastically improve within 48-72 hours. When this did not happen, the Mayes family realized they were not out of the woods yet. Nick shared, “We had a lot of ups and downs. It felt like every time we had a wrong turn, it was just getting further away from us.”
Nora was soon diagnosed with a secondary blood disorder called HLH (Hemophagocytic Lymphohistiocytosis). HLH causes an enlarged spleen and liver and can ultimately cause multi-system organ failure. Nora’s body was enflamed, her brain was swollen and her were lungs so full of fluid that she was screaming in pain. She was, in fact, very sick, to the point of needing to be medically sedated with a breathing machine.
When the medical team began treating Nora for both ehrlichiosis and HLH, things finally began to turn around. Nora spent three weeks in the hospital and the Mayes family credits the extended team at Orlando Health Arnold Palmer for saving their daughter’s life. Laura reflected, “I would like to talk to each and every one of them and make them understand how grateful we are. This is the scariest thing our family has gone through.”
Now, Laura encourages parents to trust their instincts because she is proof that someday it could help save your child’s life. With great vulnerability, she also speaks about unexpected challenges brought about by this experience. Laura shares how spending time with a qualified counselor afterward, processing the experience of watching her daughter almost die, has been essential for their family’s total recovery. “I think everyone should take care of themselves when they leave (the hospital) because I think if I hadn’t started talking to someone it would have consumed me.”
It is hard for the family to express in words how they feel about Orlando Health Arnold Palmer. Nick shares how the culture at the hospital has impacted them. “The spirit of healing extends beyond the clinical team,” Nick said, “I have never been anywhere that got everyone so involved. The culture of all the employees at Orlando Health Arnold Palmer was so impressive… from the person cleaning your room to the person serving the burgers in the cafeteria, no one brought you down, everyone was picking you up. They work together as a team to pull for your child to recover. The culture of healing made all the difference.”
The Mayes family shares Nora’s story in gratitude to Orlando Health Arnold Palmer, hoping it will impact the lives of other families.
Written by: Rev. Jennifer Prechter, MATS, BCC