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Ila Hellgren loves life. The 8-month-old is alert, wiggly, smiley and energetic, and she can’t get enough of all the new sights and sounds she encounters every day.
Her parents, Dana Hellgren and Jadon Scullion, marvel at how happy and healthy she is — just a few months ago, she was a very different baby.
Though Ila was born at 36 weeks’ gestation, she seemed healthy and didn’t have to stay in the neonatal intensive care unit. Her skin and eyes were slightly yellowish because she was jaundiced. As her pediatrician conducted follow-up examinations, he noticed her direct bilirubin level was high. Ila was referred to the pediatric gastroenterology team at American Family Children’s Hospital where further testing showed that Ila had biliary atresia, a liver disease in infants where the bile ducts in the liver become increasingly damaged and block the flow of bile from the liver to the intestine.
Ila had a surgical procedure that will, in some cases, fix this blockage, but Ila’s liver disease continued to worsen. As her liver began to fail, Ila was referred to the UW Health Pediatric Liver Transplant Program under the care of Katryn Furuya, MD, pediatric hepatologist and the medical director of the UW Health Pediatric Liver Transplant Program. Registered dietitian nutritionist Katie Bybee, RD, and liver transplant nurse coordinator Beth Gerndt-Spaith, RN, guided Ila and her parents through the liver transplant evaluation and listing process.
Ila was listed for a transplant at the end of October 2019, and her parents received a call that a liver had become available on Christmas Day. “We said to each other, ‘There’s a family who lost their child on Christmas Day and made the decision to save lives. How could we not honor this gift?’” Dana said.
Ila received the gift of life on Dec. 27, 2019, under the care of transplant surgeons including Tony D’Alessandro, MD, and within days “she was kicking and smiling and interacting with the world, despite everything she had been through,” Dana said.
Because Ila is Dana and Jadon’s first baby, they didn’t realize how lethargic her disease had caused her to become until she had a new liver. Now, they say, she’s a completely different baby. “We want everyone to know that organ donation saved our baby,” Dana said. “Grateful is never going to be a big enough word to describe how we feel.”