Brain-damaged childBy Lori Tighe
finds reason to smile
The only discernible word you can hear Jarin Fujii say is "Mom."
Once a running toddler who knew a dozen words, he is now a newborn in a 3-year-old body. He can't walk, talk, hold his head up, or eat solids. For a year he couldn't even smile.
But his mom, Naomi Fujii, is upbeat about life with Jarin now, after heart surgery caused "global" brain damage in 1998.
"There's improvement and there's hope. He's not as stiff as he used to be. You couldn't kiss his face. Now you can," Fujii said.
And the smile has returned.
"He has a very handsome smile," she said, smiling herself.
Jarin was "adopted" by a women's prayer group at Olivet Baptist Church downtown. They wanted to do more than pray for him.
Even though none of them could golf, they organized a golf tournament May 12 at Makaha Golf Club to help with Jarin's expenses. They had to learn the game to run the tournament.
Due to the overwhelming community response, they are turning teams away now.
"There are so many people who know them," said Jasmine Mau-Mukai, a member of Olivet Baptist Church and Cardiac Kids, a support group for families, including the Fujiis, with children who have heart defects. "They are sort of shy, too."
People have been drawn to help the Fujii family, Mau-Mukai said, because, "They're very giving themselves. There are a lot of friends and family who care about them."
Mau-Mukai met Fujii when her own daughter, 5-year-old Cara, at age 3 said she was afraid of dying. Cara has a hole in her heart, so Mau-Mukai began taking her to Olivet Church to "learn about God." There, she met the Fujiis.
"Jarin played with my daughter. They ran around together. Then I got the call from San Diego," she said, referring to the surgery that nearly killed Jarin.
Jarin was born March 13, 1997, with a congenital heart defect that required three heart surgeries. His last open-heart operation in San Diego, to close a hole between ventricles and put in a new valve, went awry. Doctors found air bubbles in his heart. Originally expected to be a quick surgery, the operation lasted 12 hours.
"They told us: 'If we don't find the air bubbles, then he won't make it out of surgery,'" Fujii said.
Fujii and her husband, Jay, paced the hospital halls. Doctors finally went in to close Jarin's heart when they noticed the air bubbles had disappeared.
"The doctor told us he had never seen anything like it," she said.
Their son was alive, but the 12 hours on a heart-lung monitor had caused massive brain damage affecting most of his physical and mental skills.
"They can't tell us if it's permanent, because he's so young," Fujii said. "Some people can get beyond it, others can't."
They brought their son home in November 1998, "extremely stiff."
"His knees were locked. His thumbs were turned inside and you couldn't unlock them. He was like a rigid board. He forgot how to eat. He could only moan, he couldn't even cry," Fujii said.
Jarin began smiling again in the summer of 1999. He's become responsive to his parents and continues to make incremental improvement.
The Fujiis live with her parents, but the expenses for Jarin mount: a $400 bath chair, a $300 feeding chair, a $5,000 wheelchair.
Jarin also has to have more heart surgeries to replace his artificial parts as he grows.
"It really teaches you patience," Fujii said.
"Women try to be more realistic about it," she said, referring to how she's handled it.
"Jay (her husband) was more depressed. We sought out help for him."
Then she added, "I still find times I'm thinking about how he used to be."
Fujii credits the United Cerebral Palsy Child Development Center and the Shriners in Honolulu for helping them extensively.
"We've been very, very lucky," she said.
For information about the Friends for Jarin Fujii Benefit, call Stephen Nagamine at 839-4472.