Now, nearly three years later, it’s Sydney’s battle scar – a reminder of how hard she fought just to stay alive. “No one knows what forms the defect or why it happens,” says Lauren Johnson-Robbins, MD, a neonatologist at Geisinger’s Janet Weis Children’s Hospital. “The wall doesn’t close around the bowels, so they’re exposed. Sometimes, it’s relatively easy to push them back in; other cases, like Sydney’s, are more extreme.” Sydney’s mother, Robin, remembers that her doctor first found the problem when Sydney was still in the womb. Robin needed to be prepared and needed to find pediatric specialists who could treat her daughter when she was born. She chose Geisinger, knowing that the system’s Janet Weis Children’s Hospital included a state-of-the-art NICU and renowned specialists. Sydney was born three weeks early and needed immediate intervention and preparation for surgery, due to the exposed bowels. Robin was able to see her only a few seconds before the newborn was passed to the NICU. A “silo” was attached to Sydney’s abdomen, surrounding the bowels; day by day, they would be pushed back in. Several days later, she was in the operating room as doctors tried to repair the defect. “I didn’t get to hold her for a week after I had her,” Robin says, remembering that when she finally held Sydney, “she was so tiny and she had just had surgery…. Even though we didn’t get that bonding right away, we still had it.” Sydney still faced a number of health battles, however. After three months in the NICU, she went home with a feeding tube and a central line – only to return a week and a half later. She had a serious line infection and was having trouble breathing. After three months of fighting to be healthy enough to go home, she now faced another life-or-death struggle. “I was thinking, ‘three months, and now I’m going to lose her over this,’” Robin says. “It’s highly variable how the kids will do after surgery. You’re waiting for a return of bowel function, which could take days, weeks, months – or might never be regained completely,” says Dr. Johnson-Robbins. “You never know if they’ll be the easy cases or if they’ll be like Sydney, with multiple infections and difficulty with bowel function.” “The first six months were the hardest,” Robin says. “We were in and out of the hospital constantly. I kept wondering what I was doing wrong.” There would be more emergency trips as Sydney faced complications and surgeries, celebrating her first birthday in the hospital. A further problem with her liver launched fears that she would need a small bowel and liver transplant. It was two years, Robin says, of never knowing where they were going to be the next day. Some days, it was easy to forget how sick the little girl was because she seemed to be doing so well. But, Robin adds, she was always waiting for that day when Sydney was going to get sick again. “Because she’s dealing with ‘short-gut syndrome,’ it’s somewhat of a waiting game. You don’t know if she’ll have enough to really function,” says Dr. Johnson-Robbins. “And you have all the complications, like the line infections, as well.” Good news would come on Sydney’s second birthday, though. That’s when doctors told Robin that Sydney was taken off the transplant list; the little girl had progressed so far – and her health had improved so much – that she no longer needed the transplant. “That was the best birthday present,” Robin says. “That was the day I finally thought, ‘she’s going to be okay.’” Now, as Sydney nears her third birthday, her health continues to improve. Despite the fact that she might never have complete bowel function, Robin says it’s amazing to see the difference in her daughter’s health. She says she’s comforted knowing that now, when Sydney has a fever, it’s likely a standard childhood illness – not a potentially fatal complication that will have Sydney in the hospital for a week or more. Robin also is comforted by the thought that her daughter will have all the opportunities of other children without daily health struggles and the constant threat of trips to the emergency room. She’ll have the chance to “just be Sydney.” “No matter how sick she was and how many tubes she had coming out of her, she wasn’t a sick kid to us,” Robin says. “She was Sydney. She was never different from any other kid.” She’s just short one belly button. Meet Sydney during the annual Children's Miracle Network at Geisinger Celebration broadcast on WTAJ-TV10. | 
