When she was just a few months old Sofia's parents, Fred and Dawny Hill, had to make some tough decisions. But thanks to the physicians and staff at Children's Healthcare of Atlanta, they did not have to face these challenges alone.
Sofia was born with intrauterine growth restriction (IUGR) and hypotonia that resulted in feeding and respiratory difficulties. Weighing less than three pounds at birth, Sofia spent several months in the neonatal intensive care unit (NICU). Sofia needed a G-tube, so her doctors transferred her to Children's. After evaluating Sofia, her new doctors recommended waiting on the surgery. Instead, they focused on getting her to an acceptable weight to have the procedure.
"At that point we realized that Sofia was at a better place," Fred says. "A children's hospital was where Sofia needed to be. She deserved to see these types of specialists to get the care she needed. They felt more familiar with her symptoms and were able to help us better understand what was going on with her."
After two months and several procedures, including a Nissen fundoplication and a G-tube procedure, Sofia's condition improved dramatically, and she was eventually released to go home.
During a visit to Children's for a foot surgery a month later, Sofia stopped breathing. Doctors immediately intubated her when they realized her trachea had collapsed. The Hill family had to make a decision-- keep her incubated or approve a tracheostomy. The family relied on the advice of Sofia's pulmonologist, Gary Montgomery, MD, and staff to make the decision.
"They were very receptive to the questions we had, and we knew we could depend on them to give us sound answers and clarifications," Dawny explains.
The Hills decided to have the tracheostomy. The procedure was a success and Sofia was transitioned to the technology-dependent intensive care unit (TICU) at Children's. One day, post tracheostomy, that stands out to the Hills is the day they saw Sofia smile, for the first time.
"Fred was holding her," Dawny says. "With the trach, holding her was very different. We couldn't move her too much, but he had an opportunity to hold her and it was the first time that she smiled. It was just amazing."
After three more months of hospitalization, Sofia was back home and with the help of Children's, her longtime nurse and her therapists, she has made great progress.
"Sofia is currently in Pre-K, which she loves! She is a born entertainer, frequently singing, dancing, and wearing costumes, with her sister around the house," Dawny added. Fred also commented, "Although our journey has not ended, the upcoming decannulation is a significant milestone that indicates we are headed in the right direction." The Hills agreed, "We look forward to Sofia's continued progress and are so grateful for how far she has come!"