Ein Wong wanted to see the world early – very early.
Born at 26 weeks and weighing only 2.01 pounds, he spent his first year in hospital neonatal intensive care units because of a host of medical issues.
One problem persisted through Ein’s early childhood: his inability to eat by mouth.
Equipped since birth with a gastrostomy tube (G-tube), Ein, by the time he was 6, was receiving blenderized food every waking hour through a syringe – some 13 times a day.
Disappointed at Ein’s lack of progress in a weekly outpatient feeding program, a doctor recommended that his parents, Jennifer and Wilton, enroll him in CHOC’s Intensive Inpatient Feeding Program (IIFP), the only one of its kind on the West Coast.
After graduating from the 19-day program this spring, Ein, age 6, was taking in his nutritional calories via food through his mouth for the first time. He still has a G-tube but now it’s used only for medications.
“Inpatient therapy with a dedicated group of specialists was the key,” Jennifer says. “Outpatient therapy wasn’t moving the needle.”
A team approach
For 21 years, CHOC’s IIFP has been moving the needle for kids with eating disorders.
“I’m always amazed at the progress the children can make during the program,” says pediatric gastroenterologist Dr. Joanna Yeh, the program’s medical director. “It works because it’s so regimented and the team is approaching the feeding issues from different lenses and strategies. It’s like boot camp where kids learn how to eat.”
The program requires a multidisciplinary team that collaborates closely with patients during their stay.
As program director of the IIFP, pediatric psychologist Dr. Cindy Kim provides interventions to help patients like Ein cope with hospitalization, manage anxiety, and learn behavioral strategies to improve eating skills.
Dr. Kim works closely with each patient’s parent (the same parent stays with their child the entire 19 days – in Ein’s case, it was his father) and may be present during a mealtime observation to provide education, do a review of a videotaped meal, or meet with the parent and child outside of mealtimes to provide coaching specific to the challenges they are facing.
“I feel fortunate to partner alongside parents and caregivers to equip them with strategies to successfully feed their child,” Dr. Kim says. “Watching the positive shift in the parent-child mealtime relationship is a huge reason why I enjoy working with this amazing multidisciplinary team.”
Working closely with Dr. Yeh is nurse practitioner Jazmine Bustos, who updates each patient’s primary care team regarding the child’s progress.
In addition to Dr. Yeh, Dr. Kim and Jazmine, the CHOC feeding program team includes a pediatric hospitalist, clinical social worker, occupational therapists and speech/language pathologists, a registered dietitian, a diet technician, a child life specialist, a financial coordinator and case manager, research assistant, and bedside nurses.
A host of issues
Born on the East Coast, Ein and his family didn’t move to California until he was 9 months old.
In addition to the G-tube, Ein had a tracheostomy tube and ventilator until he was 5 as well as a condition called chronic delayed gastric emptying, when the stomach doesn’t empty food normally. Doctors prescribed medication to correct that issue.
Ein also had a gastrojejunostomy tube (GJ-tube), a soft, narrow tube that enters the stomach in the upper part of the abdomen and is threaded into the small intestine. GJ-tubes are for patients who don’t tolerate G-tube feeds. Ein had a GJ-tube until was 2.
Ein also had tracheomalacia, a condition where the cartilage keeps the airway (trachea) soft, causing it to partly collapse.
Born with global developmental delays, Ein first communicated with his parents in American Sign Language.
At 4, he started speaking words and at 5, phrases.
“Now we can’t get him to stop talking,” Jennifer says with a laugh.
Ein also was diagnosed with periventricular leukomalacia, in which some of the brain’s white matter — the inner part of the brain that transmits information between the nerve cells and the spinal cord, as well as from one part of the brain to another — is damaged. Ein’s current challenge is a recent diagnosis of autism and sensory overload, anxiety, and neurodivergent behavioral issues.
Voracious reader and eater
Ein has a sister, Xyla, 3, loves to pick on him daily even though she is only half his weight.
He loves hummus, American cheese slices, mint chocolate, Nutella, fish, salmon roe, barbecue puffs, sauces, tofu, soups, and a recent favorite, avocadoes.
“His weight is fine but he’s short for his age,” Jennifer says. “Obviously, he’s got some catching up to do.”
Ein loves to read and is obsessed with helicopters, drones, airplanes – anything that flies. He loves making up jokes involving puns and wordplay. Most recently, he’s been interested in dogs and will interview every dog owner he sees to learn more about the breed and what they like to bark at.
While an inpatient at CHOC, Ein especially enjoyed the 3D printer in the Family Resource Center.
He’s now doing remarkably well as a first grader, his mother says, although she and her husband continue to collaborate with him on improving his eating skills with more complex items.
Although Ein now is eating by mouth, he still has trouble with chewing different food textures properly before swallowing.
Feeding therapist Angela Kang continues to work closely with Ein on an outpatient basis following his graduation from the IIFP. He left the program eating three main meals and two snacks per day.
Ein could get his G-tube out soon.
“It truly takes a village to transform the life of a child, and we’re so honored to be a part of Ein’s village and his family’s successful journey with feeding,” Dr. Kim says.
