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Tiny Bella Rose came into the world eight weeks early. Almost immediately, her neonatologist suspected a serious problem. Tests revealed that Bella had eight blockages in her intestine. She was immediately transferred to Nemours/Alfred I. duPont Hospital for Children, where surgery was performed on the four-and-a-half-pound infant to remove 17 inches of her small intestine. Then everything went wrong.
Although her digestive tract began working normally, Bella had a severe allergic reaction to milk proteins in her mother’s breast milk. “My husband Ron and I were asking ourselves what had caused this and could we have done anything to prevent it,” remembers her mother Jennifer.
The baby was put on a special formula and a medication to help her liver produce bile, a substance that aids in the processing of nutrients. Relieved, Ron and Jennifer took their tiny daughter home.
Just five days later, Bella was rushed back to the hospital with severe bleeding and vomiting. She was put on yet another infant formula and a medication to calm her digestive tract. In the next few weeks, Bella was seen by a pediatric gastroenterologist and had additional laboratory studies. She was given an injection of Vitamin K to help with clotting. The doctor felt that still something was not right and scheduled a liver biopsy. Because the biopsy was inconclusive, exploratory surgery was performed. Bella was now five months old. “We were told that either they would do a Kasai procedure (an operation to create an open duct so bile can drain from the liver) or she would need a liver transplant,” says Jennifer. “When the surgeon came out and said she would need a transplant, that’s when I really broke down. She was so tiny.”
“Louise Flynn, an advanced practice nurse from the transplant team, worked with us to explain everything,” says Jennifer. Meantime, Bella was slowly going downhill. She developed a bacterial infection, then RSV, a respiratory virus that can be very serious in children with compromised immune systems.
“During two and a half weeks in the hospital, they tried to build her up with vitamins,” recalls Jennifer. “The nurses were absolutely wonderful and made us feel at ease in a situation that just went on and on and on.” Bella was sent home with a nasogastric tube to deliver formula directly to her stomach. “That was a real low point. At 8 months of age, she only weighed 13 pounds and was jaundiced. You could actually see her bones.”
During this period Jennifer went through testing to determine whether she could donate a lobe of her liver to Bella. Approximately 40% of liver transplants performed at the hospital are from live-related donors which lessens the chance of rejection. “The lobe of my liver was a perfect fit,” remembers Jennifer. “The surgery would be on my birthday, November, 30.”
Jennifer underwent the eight-hour procedure, performed by Stephen Dunn, MD, and Anthony Savo, MD, at Nemours/Alfred I. duPont Hospital for Children. Two days after her diseased liver was replaced with the lobe from her mother, Bella woke up to the sound of Jennifer speaking her name. For the first time in many months, the whites of her eyes were not yellow.
Although she would be on a “cocktail” of medications for months, and need early intervention services to help her catch up developmentally, Bella was soon eating well and gaining weight. Starting with her fingers and toes and ending with her belly, Bella’s skin gradually lost its yellow hue. Today, she is full of energy and plays happily with her sister.
“Every day, I remember what a miracle it is that she survived. I’m so grateful for the care Bella received. This whole experience changed our lives — Ron and I don’t sweat the small stuff anymore.”