Cystic Fibrosis
It didn’t add up when Toby Ricard received a failure to thrive diagnosis at his first-ever pediatrician checkup. His mother, Carrie, knew he was eating well, but he was losing too much weight. Toby’s pediatrician referred him to the local hospital for further testing. “They couldn’t find anything wrong, so they sent us home,” Carrie said. “We were terrified, but thankfully our pediatrician kept pushing to get us answers.” At the request of Toby’s pediatrician, Carrie started a thorough log of Toby’s eating. Toby was referred to a gastrointestinal specialist, and that’s when doctors zeroed in on a diagnosis. “For confirmation, we were sent to Children’s of Alabama for a sweat test and blood test,” Carrie said. “That’s when we got the official diagnosis of cystic fibrosis.” At the time, cystic fibrosis was a condition the Ricard family didn’t know much about, so Children’s set up a learning opportunity. The family spent a whole day in Birmingham with the hospital’s cystic fibrosis team to learn all about the disease and how they can best take care of Toby. “We started off terrified with the diagnosis, but Children’s was fantastic in making sure we got the information and education we needed,” Carrie said. “We had no idea what to do after diagnosis, but they got with us right away and made sure we had all of the knowledge we needed. It was like a lifeline was given to us.” Toby did well the first few years after his diagnosis. He returned home, managed treatment and visited Children’s for quarterly appointments. But when Toby neared adolescence, he began having frequent lung infections that landed him in the hospital every few weeks. “We got to the point that he was being admitted every six to eight weeks and he would be there for two weeks at a time,” Carrie said. While Toby endured round-the-clock therapy and treatments to rid his body of infection, he and his family grew more grateful for Children’s child life specialists who brought Toby books to read and art projects to create. A teacher would visit Toby to make sure he stayed up-to-date on schoolwork and even provided him a tutor for algebra. “They saw to every need, not just medical,” Carrie said. “At Children’s, he really has an entire community there for him and it’s really special. He views them as friends because they are so kind to him. When you have something that keeps you in the hospital for so long and you don’t have the opportunity to have a real life at home, it can get lonely. But the nurses and staff at Children’s go out of their way to take time to talk with him and play games with him, and that helps him so much.” To combat Toby’s lung infections, doctors prescribed him a new medication that has proven effective thus far. “It has been a miracle drug,” Carrie said. “It’s still early on, but so far it’s helping his body function like it’s supposed to.” And while Carrie knows the new medication won’t necessarily keep Toby out of the hospital, she finds comfort in knowing that Toby is in good hands at Children’s. “I have five other children so it can be hard as a mom to always be at the hospital with Toby when I have to still take care of the needs of my other children at home,” Carrie said. “It’s comforting for me as a parent to know that if I can’t be there with him every minute that the nurses and staff are taking such good care of him. It does so much good for a mom to know that her child is being cared for so well so that she can have peace of mind when she can’t be there.”
