(FORT WORTH, Texas) — Christmas came early for an Abilene, Texas, family whose 2-year-old daughter is home Thursday after spending her entire young life being treated at a Fort Worth hospital.
Adalynn Willett was born with her intestines and liver outside her body. The toddler went home for the first time this week after spending 850 days in Cook Children’s Medical Center.
“She is very excited to be home,” says her father, Bryan Willett. “She is full of joy.”
Her trip home was a long journey in the making.
Over two years ago, Adalynn was born with a birth defect in her belly wall. All of her intestines and her liver were outside of her body. The condition is known as omphalocele, and doctors discovered it when Adalynn was still a fetus.
After her birth, her parents thought the hospital stay would only be about three months. Twenty-eight surgeries and countless hours of physical therapy later, the young girl walked out of the hospital, the only home she had ever known.
Hospital staff had become her extended family and the sense of pride in her condition is evident.
“The fact that we were able to manage it so that she is going home for Christmas is nice,” says Adalynn’s attending physician, Dr. Nancy Dambro.
And, after spending almost every day with the young child, Dambro notes the trip home is not bittersweet.
“You’d think it is, but it is not,” she says, adding, “Her job is not to be here every day being cute and smiling at me and cheering me up on my rounds. Her job is to go home and become a productive human being.”
Omphalocele is extremely rare. Each year, about 1 out of every 5,386 babies born in the United States is born with the abdominal abnormality, according to the Centers for Disease Control.
Adalynn’s condition posed an even bigger challenge for the more than half a dozen physicians and medical staff at Cook Children’s because, unlike most cases of omphalocele, her entire intestinal system was outside her body. Known as giant omphalocele, such occurrence happens in only 1 out of every 10,000 babies born in the U.S.
Copyright 2012 ABC News Radio
Kevin Conlon, Euan McKirdy and Johanzynn Gatewood, CNN
Heather Simonsen, KSL.com
Susan Scutti, CNN