When Gaby was four years old, her family noticed that she was barely talking, was frequently losing her balance, and experiencing severe migraines. After going through many tests, including a sleep study, they found out that she had Chiari malformation.
As Gaby continued to grow, her doctors uncovered more diagnoses including scoliosis, postural orthostatic tachycardia syndrome (POTS), Tethered Cord, Syringomyelia, secondary Hydrocephalus PTSD, among many others. Gaby was seeing a plethora of doctors and undergoing several different therapies, surgeries, and medications. However, her family was having difficulty finding doctors that specialized in Gaby’s conditions in Tampa. After doing some research, Gaby’s mom, Diana, found Nemours Children’s Hospital, Florida.
Their first visit at Nemours Children’s was with the neurology team in Orlando when Gaby was about nine years old. “As a parent who has dealt with so many doctors, I have experienced doctors who don’t even know how to pronounce her conditions, and only see her as another number,” says Diana. “To me, what stood out about Nemours, is that they not only saw Gaby as an individual, but they also believed in their team. Rather than just taking her on as their own patient regardless of their specialty, they would recommend the doctor that would provide Gaby with the best care. That’s how we met Dr. Rossi, we were told that he would be the best fit for our daughter. Dr. Rossi suggested she try pelvic floor therapy rather than some of the medications she was taking. This worked wonders for her, and I was always grateful to hear about his alternatives to heavy medications for my daughter. He has always appreciated my view as a parent. I mean, if I she needs to take a medication, of course we will. But, when possible, Dr. Rossi values my opinion to avoid heavy medications.”
“Then, when it came to neurosurgery, Dr. Scherer was recommended to us,” says Diana. At one point, Gaby had to go in for an emergency surgery to replace a shunt. “Dr. Scherer personally called me to talk about the situation,” says Diana. “For her to take the time to call me, after a long day at work while she is getting home to her own family, was truly amazing. The care, the service, the support at Nemours was amazing.”
“Dr. Scherer took the time to talk with us during and after the surgery. While Gaby was in the PICU, Dr. Scherer didn’t get to come to see her before she was discharged. But she called me and said, ‘I apologize, I was called in for another surgery, but I wanted to follow up with, to make sure that everything is OK.’ That’s something that I haven’t had in other hospitals. Because of the care that we have received at Nemours and the fact that they specialize in Gaby’s conditions, I feel more comfortable having that team of doctors all together. So, that’s why we’ve been transferring from doctors in Tampa to here in Orlando.”
In addition to Dr. Rossi and Dr. Scherer, Gaby has also started seeing Dr. Khoury in orthopedics, Dr. Kakavand in cardiology, and Dr. Seth in urology. “Since coming to Nemours, I feel that we are in a safe place for Gaby. Every one of her doctors has always been so responsive and knowledgeable. They are open to taking her in, even as a complex patient, and learning more about her conditions, and guiding us in the right direction.”
Gaby says that her favorite memory since visiting Nemours was when a child life specialist came to play with her and spend time with her after a surgery. “She also helped my parents not be stressed out,” says Gaby. When she grows up, Gaby wants to be an artist. “I want to have my own art studio and also go to children’s hospitals to do art therapy with kids,” says Gaby. “Because I know when I have been in the hospital art has helped me.”
