Baby Ryan Defies The Odds Doctors Say His Chances Are Slim, But Then, No One Thought He’d Make It This Far
FOR THE REDORD (August 5, 1995): Nine-month-old Ryan Nguyen’s doctors did not say his chances of living are slim. His pediatrician said his chances of growing up to be a normal child are small. A headline in Friday’s Spokesman-Review indicated otherwise.
It takes two to dress Baby Ryan.
The chubby 9-month-old boy squirms as his mom works his legs into place and his dad lifts the baby’s feeding tube far above the fray.
Carefully, Nghia and Darla Nguyen snake the tube sprouting from Ryan’s stomach through a hole cut into his outfit. Nearly all his clothes have identical holes.
Two-year-old Austin picks this moment to clamber over his mother’s left shoulder and flop onto the couch behind her. She barely notices.
Nghia “Jack” Nguyen (pronounced “win”) looks at a clock on the living room wall and sighs. “It’s 1:20 already.”
So go the humid summer afternoons at the Nguyen house, where caring for Ryan saps everyone’s time and energy.
The sick, premature baby - who Spokane doctors predicted last fall would die - is very much alive today. He hardly slept all night and stayed awake most of the morning, too.
His parents are so exhausted they yawn again and again. “There’s no such thing as eight hours’ sleep,” says Nghia Nguyen.
There probably won’t be for a long time.
Ryan was released from the Legacy Emanuel Children’s Hospital in Portland five months ago. His medical bills, which are covered by Medicaid, already top a half-million dollars, not counting doctors’ bills and the medicine he uses at home.
Still, doctors aren’t certain how badly damaged his brain is. They suspect some injury.
His pediatrician, Dr. Phillip McGuiness, doubts he’ll grow up to be a normal kid: “I think the chances are extremely small.”
Narrowing in Ryan’s intestines keeps him from eating and digesting food properly, and doctors are worried that scar tissue from surgery to remove a blockage could cause even more narrowing.
He’s been in and out of the hospital several times with fever caused by infection in his catheter line.
His parents track good signs and bad signs: Ryan can’t hold up his head, but he does reach for the Big Bird figurine dangling from his mobile. Occasionally, he tangles his toes in his feeding line and pulls it toward him.
Most of the time, Ryan is tethered in place by plastic tubes. One pumps formula into his stomach; an IV is bound to his right forearm with an ACE bandage.
When he’s feisty, his right arm is restrained so the tube can’t pull from his arm. The other tube hurts his belly when he manages to roll over.
The Nguyens have grown accustomed to pumping drugs into Ryan’s IV and feeding tube drugs to prevent infections, blood clots, gagging and seizures.
Nghia and Darla Nguyen take turns pulling on latex gloves, washing syringes and measuring drugs. They memorize dosages and move with the assurance of pharmacists.
“I was a total nervous person in the beginning,” says Darla Nguyen, who admits a fear of needles. “We never had to do this in the hospital.”
In the small kitchen, Tupperware bowls don’t contain leftovers, but dozens of syringes - 10cc, 5cc, 3cc, 1cc. The Nguyens clean them in soapy water in a green, plastic sand pail.
They pay close attention to a heart monitor strapped around Ryan’s waist, fearing he will choke on vomit and stop breathing.
“One of us has to be around him the whole time, in case he starts to gag,” Darla Nguyen says.
Now and then, Nghia Nguyen pulls out a stethoscope and listens to Ryan’s heart. He collects urine samples for blood sugar tests from Ryan’s diapers.
Occasionally, he burns off excess tissue around the stomach tube with a stick of silver nitrate - a procedure usually done at hospitals.
Every hour, someone completes a long checklist of everything from Ryan’s heart rate and skin color to how much fluid he’s taking.
“It’s hard, but it’s enjoyable,” says Nghia Nguyen. “It’s fun. It’s worth it.”
An uncertain future
Ryan will need close monitoring for years.
If the transplant he’ll need between age 3 and 6 to replace his damaged kidneys is not successful, the boy will then need dialysis, McGuiness says. There’s also a chance he could develop cerebral palsy.
Already, Ryan has suffered some cirrhosis of the liver from the rich mix of proteins, carbohydrates, fat, electrolytes, minerals and vitamins pumped into his arm.
Doctors hope to get Ryan to eat on his own before the nutrients severely damage his liver. But that may be at least a year.
“He’s far from out of the woods,” McGuiness says.
Today, Ryan had finally nodded off when his parents woke him to check his temperature and heart monitor and dress him for his 2 p.m. appointment with a Portland kidney specialist.
The Nguyens love their frequent visits with Dr. Randall Jenkins.
In their minds, Jenkins is the dashing knight who scooped up their premature baby in mid-December after doctors at Spokane’s Sacred Heart Medical Center gave him up for dead.
By offering to treat Ryan, Jenkins ended a court battle in which the Nguyens hoped to force Sacred Heart to keep Ryan on kidney dialysis, although Spokane doctors insisted doing so was futile.
The Nguyens, both 32 and married two years, moved from Spokane to Vancouver to be within a 20-minute drive of Ryan’s new doctors.
Seven months and some 11 pounds later, Jenkins coos at the sleepy child and admires his thick brown hair.
“His kidney function tests have been fine. His head’s growing real good, too. His growth rate looks really good. I think he’s doing real good. It’s kind of fun to see him getting more mobile.”
In a couple of months, Jenkins says, the 19-pound boy may be off his blood pressure medicine.
Nghia Nguyen smiles. “Everything look good, dude,” he tells Ryan in his thick Vietnamese accent. “We’re ready to rock and roll.”
Not quite.
Tired but optimistic
Back in the family’s two-bedroom duplex with no air conditioning, Ryan lies in the living room in front of a fan - an early birthday gift from sympathetic grandparents.
He spends most days and nights lying in the living room cluttered with his brother’s toys, sometimes watching Austin play on the floor beside him.
Often, Ryan sways his head back and forth, rhythmically, dozens of times before suddenly stopping. It’s his way of comforting himself when he’s tired or unhappy, McGuiness suspects.
Ryan’s parents take care of him from noon to 8 p.m., when registered nurses take over. Even then, the Nguyens can hardly tear themselves from the room.
Sometimes they sit up through the night watching TV within hearing distance of the heart monitor or talking to the night nurse - so far, they’ve had more than a dozen nurses.
“There’s no such thing as privacy anymore,” Darla Nguyen says.
The Nguyens are on welfare and don’t hold paying jobs. Darla Nguyen, who once worked at Key Tronics Corp. in Spokane, hopes to go to work for Hewlett-Packard in Vancouver.
“Ryan is my full-time job,” Nghia Nguyen says. “So is Austin.” The couple has agreed he will be the children’s main caretaker.
The Nguyens are tired and tense, but they’re also optimistic.
Members of St. Patrick’s Parish in Spokane, they’re confident God has chosen to save their baby. They envision Ryan sharing bunkbeds with Austin someday; they wonder which school he’ll attend.
“I can’t wait till these two can go to the park together or go to the mall together,” Darla Nguyen says, watching Austin plant one of his frequent kisses on Ryan’s forehead.
For now, though, the family will chip away at short-term goals: Teaching Ryan to suck using peppermint-flavored sponges. Teaching Austin to stop tangling himself in his brother’s feeding tubes.
Soon, Ryan will attend physical therapy sessions and feeding clinics.
After that, who knows? Even the Nguyens aren’t sure. Maybe, they say, another baby.
“Jack wants another one, but I’m not sure,” says Darla Nguyen. “Not after this. I want to make sure (Ryan) gets everything done that needs to be done before we bring another one in.”
, DataTimes ILLUSTRATION: 3 Photos (2 color)
MEMO: See related story under the headline: Taxpayers pay bills through Medicaid