Long Beach resident Amy Wilson said her daughter Fionnula loves to eat.
“She loves to eat oatmeal and avocado and red beans and rice — she loves red beans and rice,” Wilson said.
But it’s been months since Fionnula, 9, has eaten her favorite foods. It’s also been months since she slept in her own bed at home. And there was a time when Wilson said she was afraid Fionnula would not be able to eat with her mouth.
Fionnula went to Memorial Hospital at Gulfport with stomach problems after throwing up on Memorial Day. And almost five months later, she is staying with her mother 1,000 miles away from home at the Ronald McDonald House in Omaha while she awaits a small-bowel transplant at Nebraska Medicine.
When we got to Mobile, she was so unstable that they couldn’t even move her to the operating room and they had to do the surgery in her room.
Amy Wilson, Fionnula’s mom
Fionnula was born with Trisomy 18, or “Edward’s syndrome,” a genetic disorder caused by a third copy of chromosome 18. Babies born with the disorder often have defects in their hearts or kidneys.
“We were very fortunate because she did not have any defects when she was born,” Wilson said. “She’s just very delayed.”
Wilson said when Fionnula threw up on Memorial Day, they took her to Memorial, but they were not prepared for her diagnosis.
“She had an intestinal volvulus,” Wilson said. “This is when your intestines wrap around your main artery and it cut off all of her blood supply — she not only had the volvulus, but she was also in septic shock.”
Wilson said she received the diagnosis about 12 hours after they went to the emergency room.
Fionnula was airlifted to the University of South Alabama Medical Center in Mobile, where she underwent three surgeries to remove parts of her small intestine.
“When we got to Mobile, she was so unstable that they couldn’t even move her to the operating room and they had to do the surgery in her room,” Wilson said.
Through the three surgeries, Fionnula would lose almost all of her small intestines. She stayed at USA for almost four months.
Heading to Omaha
Wilson said it was determined that her daughter needs an intestinal transplant.
“Because of her Trisomy 18, several places wouldn’t even look at her, which was a drag and terribly unfortunate,” she said. “But Omaha was like, ‘Yep — send her up here,’ and they didn’t even mention the disorder.”
Fionnula was evaluated for a small-bowel transplant, although she is using what is left of her own intestines.
“She went through and intestinal rehab program, and right now that’s what we are working with because they try to put off the transplant as long as possible,” she said.
Wilson said Fionnuala was discharged from Nebraska Medicine on Oct. 13. They are still staying at the Ronald McDonald House while she undergoes some clinics and testing before she heads back home to Long Beach.
The long road home
“She hasn’t been home since Memorial Day,” Wilson said. “I came home a couple of times when she was in Mobile.”
Wilson and her husband, attorney Luke Wilson, have two other children — Sully, 12, and Tallulah, 5.
She said Fionnula is looking forward to getting home.
“She misses her family and she misses her school — she goes to Quarles Elementary,” Wilson said.
And with Fionnula able to eat some foods again, Wilson said she is hoping she will soon get to feed her some red beans and rice.
“She hasn’t had any yet, but hopefully she can when gets home,” the mom said.
With more trips on the horizon to Omaha,Wilson said is trying to make the best of it while she’s away from home.
“I went to a bar in Omaha and they put it on the Ole Miss game for me,” she said. “We lost, but it was still comforting — all of the other TVs were on the Nebraska game, so Nebraska is going to be my Big 10 team.”
A GoFundMe account has been set up for the Wilson family to help with expenses.