By Ken Sakamoto, Star-Bulletin
At her weekend party, Raelyn Naleieha, 8, has a good time
with family and friends, including foster parents Al
and Aileen Waiau, shown here.
Island child, 8, departs
for bowel transplant
Full of energy, Raelyn Haleieha
By Helen Altonn
nevertheless needs 24-hour care
Star-BulletinTo look at Raelyn Naleieha, you wouldn't think there was a thing wrong with the 8-year-old dynamo. She dashes around unconcerned about a pump drip-feeding nutrition into her stomach from a 5-pound backpack. She's attached to it 19 hours a day, wearing it except when sleeping.
She's also fed intravenously through a large catheter in her chest for more than 10 hours a night four nights a week.
Raelyn suffers from "short gut syndrome," requiring intensive 24-hour care.
She left last night to await a small bowel transplant at the University of Nebraska in Omaha. Accompanying her were her foster parents, Aileen and Al Waiau, and two of their three daughters.
Most of Raelyn's small intestine was removed at birth because it was abnormal, leaving too little to absorb what she needed to eat to survive, said Dr. Claire Wilson, pediatric gastroenterologist specialist.
Two of her three siblings, living with their biological family in Waimanalo, had similar conditions but required only temporary nutritional support, Wilson said.
Raelyn lived with her birth parents, Winona and Donovan Naleieha, until about four years ago. The family has so many members who require care that they couldn't provide the high-level maintenance Raelyn requires, Wilson said.
She said Raelyn isn't in any pain; she goes to school and is very functional, but she's always at risk of infection with the intravenous line.
Her incision areas must be cleaned scrupulously and dressings can't get wet, she said.
Her medication needs cover two sheets of paper. And every night a special blend of vitamins, medicine and nutritional products must be precisely measured and mixed for the pump feeding.
Many tube-fed people won't eat much by mouth, but Raelyn will, which is necessary for transplant surgery, Wilson said.
The child was listed for a small bowel transplant three years ago but the procedure still is relatively new, Wilson said. "She was doing so well, we didn't feel the benefits truly outweighed the risks."
It was decided to go ahead now because her liver is beginning to show signs of deterioration, Wilson said. Also, she's bigger so it will be easier to find a donor, she said.
With a transplant, Wilson said, there is a "reasonable chance" that she could get off drip and intravenous feedings and sustain herself by eating. "My optimism is balanced by what happens if we do nothing," she added. "She could die of liver failure."
Her various foster parents say nothing holds her back.
"I don't know where she gets all her energy," said Al Waiau, watching her run around their Punchbowl home giving her parrot water and doing other chores.
"She's like a tornado," said Cherry Tengan. She and her husband, Russ, cared for Raelyn as foster parents for nearly four years with help from Aileen Waiau, a respite worker with Interim Health Care.
A former Kapiolani nurse, Waiau had known Raelyn since birth. The child spent much of her first four years in and out of the hospital. The longest stay was about 10 months.
Winona Naleieha took Raelyn to Nebraska when she was 2 years old to lengthen her bowel. It helped considerably but wasn't enough to eliminate the tube feedings, Wilson said.
The Kapiolani Family Fund, supported by the Kapiolani Children's Miracle Network, is helping to fund some of the Waiaus' travel and living expenses.
Aileen Waiau said she didn't know how they could get away to take Raelyn to Nebraska but Wilson persuaded them.
The family had a lot of questions, said Pat Sornsin, social worker in the state's adoption unit.
The big question is how long they'll have to wait for an appropriate donor.
Excited about the trip, Raelyn said she was going to Nebraska to get "a gut."
What will she do if she can discard her feeding tubes?
"I'm gonna run into in the pool."
An outpouring of love and care
By Helen Altonn
has kept Raelyn alive
for 8 years
Star-BulletinIt's taken more than a village to keep Raelyn Naleieha alive for eight years. "It's a small town," says one of the major players in her care, Dr. Claire Wilson, pediatric gastroenterologist specialist.
She says the child, who "loves life and loves people," has rallied around her a huge ohana of medical personnel, her natural parents and extended family, several sets of foster parents, neighbors, social workers, respite workers and night nurses.
Afflicted with a rare medical condition, Raelyn spent so much time at Kapiolani Hospital in her first four years that residents and nurses toilet-trained her, Wilson said.
"Doctors practicing in the community took care of Raelyn as interns on rotations. There were times when you couldn't learn this program if you didn't know Raelyn."
No one has been involved more than Wilson, say Raelyn's current foster parents, Aileen and Al Waiau.
Wilson and her husband, Terry, also were involved in a complex plan to get Raelyn into a foster home when she was 4 years old.
Debbie Hudson, then a nurse at Kapiolani, had been taking Raelyn out of the hospital for weekend outings. They visited Hudson's sister, Cherry Tengan, her husband Russ and their two children in Ewa Beach.
When Raelyn was about 3-1/2 years old, the Tengans were asked to take her as foster parents. She had to have a home as a condition of a proposed small bowel transplant, Cherry Tengan said.
She and her husband didn't think they could do it but their children agreed and they spent three months learning what to do, Tengan said.
"We would go in every night to the hospital just to play with Raelyn at the beginning."
They did everything alone for six months, taking turns with nightly tube feedings and other responsibilities, Tengan said. They sat at the dinner table with the child for an hour making her chew -- a requirement for the transplant.
Since she and her husband both go to work early, an arrangement was worked out where the Tengans would drop Raelyn at Wilson's house at 6 a.m., then Wilson would drive her to Kamehameha Preschool.
Aileen Waiau, Raelyn's current foster parent, would take care of her after school until the Tengans picked her up.
After Raelyn finished preschool, Waiau started caring for her in the early mornings so she could go to Pauoa School with the Tengans' children.
The Wilsons took Raelyn on Sundays to give the Tengans a break -- a practice they continued with the Waiaus.
The Tengans had to stop caring for Raelyn in April when Waiau's employer, Interim Health Care, no longer allowed employees to care for patients in their own homes.
The Waiaus then became Raelyn's foster parents.
Wilson said anyone who meets Raelyn wants to help her because she's such a remarkable, loving child.
More than 100 people probably have been involved in her care, Wilson said.
