HOLLIS, Maine -- A 9-year-old Maine girl is home from a Boston hospital healthy, active and with high hopes -- and a new stomach, liver, spleen, small intestine, pancreas, and part of an esophagus to replace the ones that were being choked by a huge tumor.
It's believed to be the first-ever transplant of an esophagus and the largest number of organs transplanted at one time in New England.
Spunky and bright-eyed as she scampered around her family's farmhouse outside Portland, Alannah Shevenell said Thursday that she's glad to be feeling well again and able to go sledding, make a snowman, work on her scrapbooks and give her grandmother a little good-humored sass.
The best part, though? "Being home," she said. "Just being home."
It was 2008 when Alannah, then 5, began running a fever and losing weight while her belly swelled. Doctors discovered the tumor that year and twice attempted to remove it, as it made its way like octopus legs from organ to organ. But it was difficult to access what turned out to be a rare form of sarcoma, said Debi Skolas, Alannah's grandmother, and chemotherapy didn't do the trick, either.
All the time, the growth -- known as an inflammatory myofibroblastic tumor -- continued to grow in her abdomen, causing pain, making it hard to eat and swelling her up with fluid. Surgery was the last resort to save her life, and Alannah spent more than a year on a waiting list for the organs, said Dr. Heung Bae Kim, the lead surgeon on the procedure at Children's Hospital Boston.
The family was told there was a 50 percent chance Alannah wouldn't survive the procedure. But without it, she had no chance whatsoever.
Things were more tense than celebratory in October when doctors prepared to remove the growth and the organs in one fell swoop and replace them with organs transplanted in one tangled piece from another child of similar size.
The hardest part was taking out her organs and the tumor, Kim said, calling it a difficult operation with lots of blood loss.
"It's probably one of the most extensive tumor removals ever done," the surgeon said.
Dr. Allan Kirk, professor of surgery at Emory University in Atlanta and the editor-in-chief of The American Journal of Transplantation, said no other esophageal transplant has been reported in medical literature.