Unable to make a diagnosis, doctors made the decision to send the day-old newborn for specialized care at Geisinger’s Janet Weis Children’s Hospital. “Before we knew it, the helicopter was there, and they were preparing Bailey to fly,” Amy says. They watched as Bailey was strapped on the gurney and knew they would have to travel roughly 90 miles by car to meet her at the children’s hospital. By the time Amy and Michael arrived, doctors at Janet Weis Children’s Hospital had completed a number of tests, but they still did not have a definitive answer. Bailey already had lost more than a pound of her birthweight and was dehydrated. “When Bailey came to the neonatal intensive care unit, we could see that she had a flat abdominal cavity,” says Lauren Johnson-Robbins, MD, neonatologist at Janet Weis Children’s Hospital. “We were fairly certain of the diagnosis, but we would need to do surgery to know definitively.” At only five days old, Bailey underwent surgery, and the diagnosis was confirmed; Bailey was suffering from duodenal atresia and jejunoileal atresia. Parts of her intestine were blocked, and her digestive system could not function because of it. “We had never heard of it,” Amy says of the diagnosis. “We couldn’t even say it when Dr. Johnson told us.” Bailey had about 9 inches of functional intestine – compared with a normal newborn length of about 10 feet. “This diagnosis is not very common at all,” says William Cochran, MD, Janet Weis Children’s Hospital gastroenterologist. “But because Janet Weis Children’s Hospital is a specialized care resource, we do treat a number of patients who have been transferred from local hospitals with the condition.” Drs. Johnson-Robbins and Cochran both say that, with this diagnosis, improvement often takes a long time. Feedings become trial and error, finding the right mixtures and right combinations. “There was a lot of waiting. She could only take a tiny drop of formula at first. We waited weeks for a bowel movement,” Amy remembers. She also remembers that every seemingly small event was something to celebrate with Bailey. “The first day she pooped, we called everyone,” she laughs. “It’s that kind of stuff that you don’t realize you’ll be talking about.” Amy and Michael made the two-hour trek to Danville often during the two months Bailey was in the NICU, waiting for those steps to celebrate with Bailey while also caring for Alex, who was two-and-a-half years old at the time and was eager to meet his little sister. Bailey was improving, though, and was nearing the time she would go home. “You could definitely see improvement during her time there,” Amy says. “We would visit and her color would get better or she would gain weight or she would show a different smile.” The best news came when Michael’s parents were visiting from Minnesota. After visiting their new granddaughter at Janet Weis Children’s Hospital, they found out she would be discharged the next day. But while Bailey was well enough to go home, she was not out of the woods yet. She had a total parenteral nutrition (TPN) line, an intravenous line that delivered nutrients customized to Bailey’s needs. “The biggest hurdle with this condition is not the length of the bowel,” Dr. Cochran says, “but getting through the first year and getting off TPN.” “She was in and out of the hospital the first year because of infections,” Amy says. Dr. Johnson-Robbins remembers that Bailey was readmitted to the NICU after three months, then went home, then was readmitted after three weeks while she progressively recovered. Today, 2-year-old Bailey has overcome those infections and is doing well, but she still has a long road ahead of her. Though she still has a feeding tube, doctors expect it to be removed before Bailey starts school. She eats some by mouth as well, though she is allergic to milk, and she seems to especially enjoy pancakes – even having a pancake cake for her second birthday. She’ll continue to receive follow-up care from Janet Weis Children’s Hospital specialists, but she has no limits for activity. “Long-term, she should do great,” Dr. Cochran says. “Though she still has significant allergic issues, she has dramatically improved.” “Bailey has come a long way,” Amy says. “Now, she’s pretty much a typical two-year-old.” | 
