Ryan Nguyen has a soundtrack. He gnaws on the corner of the radio during “I’m Walking on Sunshine.” He stares at nothing during “Rock This Town.” He twists the volume knob higher to “I Will Survive.”
Ryan, born premature with severe birth defects such as mangled kidneys and unformed intestines, turns 3 years old today.
He will celebrate at his grandmother’s home while leashed to machines. Most likely, he’ll play with Winnie the Pooh toys to an audience of his parents and his brother and the constant click of a feeding machine as backup music.
None of this was supposed to be.
Ryan’s family wasn’t supposed to be homeless, caught in a web of federal programs and medical care. Their rickety blue van wasn’t supposed to be putting on hundreds of miles every week, loaded up with boxes and papers.
And - just ask Spokane’s Sacred Heart Medical Center - Ryan definitely wasn’t supposed to live.
Yet here he is, crawling around the floor of a Spokane motel room and treating his father like a jungle gym, in one of many places he’s called home.
“He still has a slow heart rate,” says Nghia “Jack” Nguyen, 34, Ryan’s father. “Sometimes, he forgets to breathe. You kind of have to give him some help.”
Ryan Nguyen (pronounced “win”) was born on Oct. 27, 1994, in a hospital that had no hope for him. Sacred Heart staff tried to stop kidney dialysis and said any medical treatment was futile.
The family moved to Vancouver, Wash., to be near Legacy Emanuel Children’s Hospital in Portland, which swooped in to care for Baby Ryan.
His case drew national attention and sparked a debate on medical ethics. Ryan’s battle was even included in an anti-euthanasia book, published in June, called “Forced Exit - The Slippery Slope From Assisted Suicide To Legalized Murder” by Wesley Smith.
This family’s slope has been a constant climb.
Both parents have been unemployed for years. Jack Nguyen says his full-time job has to be Ryan. Darla Nguyen says she can’t work because of carpal-tunnel syndrome and because she’s waiting for a settlement from the Department of Labor and Industries.
With only welfare to support them, the Nguyens say, they ran out of money to pay rent. They were evicted in February from their Vancouver home, when Ryan’s temperature was 105.6 degrees.
Then they turned into vagabonds.
The Nguyens live on welfare money and a deck of five credit cards, hopping from motels to hotels to family good will. Some credit cards have a debt of $10,000. The Nguyens shuttle between Spokane and the Portland-Vancouver area.
The Nguyens want to find a home near Portland, near the only hospital that will care for Ryan. But they say they’re having a hard time getting on subsidized housing lists.
They were recently in Spokane at the Select Inn on Second Avenue, the cheapest hotel they could find. The Nguyens spread out a blanket on the floor, Ryan’s world, where he wobbled around in a Wile E. Coyote shirt and red sweatpants, split on a seam.
The hard times are frustrating for for many who rallied to help. Francie Retchless set up a trust fund for the Nguyens in Vancouver after the family was evicted. Not many people donated. A few hundred dollars was given to the family.
Some people called Retchless and said the Nguyens should just let their son die.
Retchless befriended the Nguyens after seeing a news story about their eviction. She hasn’t heard from them since Ryan was in the hospital, about two months ago.
The family just disappeared, she said.
“I guess I started out thinking they were really misunderstood and ended up wondering where it’s all going to go,” Retchless said. “The behavior, the challenges, the moving from hotel to car to hotel to car - where do you think it’s going to end? I don’t see any end, I don’t see any change.”
The Nguyens say they keep moving to stay ahead of Child Protective Services and the Department of Social and Health Services, which they fear is trying to gain custody of Ryan or their other son, Austin, 4.
“That is absolutely not true,” said Kathy Spears, a spokeswoman for the department, which oversees Child Protective Services. “What we would like to do is find them to offer them services, offer them housing. We have no intention of forcing their children away from them.”
But the department can’t find the Nguyens. Neither can the family’s lawyer, without some work.
The family stays in constant touch with doctors. Ryan now weighs 32 pounds, after gaining only 13 pounds in the past two years. He still has problems with his kidneys and liver. He still can’t eat solid food.
Instead, he’s hooked to a rich mix of nutrients such as protein, vitamins and electrolytes 18 hours a day. The same mix that keeps him alive is eating away his liver.
His prognosis is uncertain. Unless Ryan starts eating soon, he will have even more liver problems. He will probably need a kidney transplant, though his kidneys function now. It’s unclear if his intestines will ever develop enough to support him without IV nutrition.
“Ryan has had little change in the past 12 months, regarding his health,” said Claudia Brown, spokeswoman for Legacy Emanuel Children’s Hospital.
Ryan has improved in the past year developmentally. He sits up now and “cruises,” scooting his little body across the floor.
He was just in the hospital for three weeks because of a severe infection.
“He got pretty sick this time,” Jack Nguyen said. “Everything in his body was breaking down.”
Jack Nguyen is a father, a mother and a nurse to the child, who requires a constant eye, whether from a machine or a person.
Ryan’s mother, Darla Nguyen, 34, has trouble holding her son, trouble doing much of anything. She had another surgery in June, to try to fix hands crippled by carpal tunnel syndrome.
She filed a worker’s compensation claim with her self-insured employer in October 1994, but the claim was referred to the Department of Labor and Industries.
The department confirmed that Darla Nguyen has an open claim but has asked for more information before deciding whether to pay.
Darla Nguyen waits for a settlement, like she’s waited for years.
The family is no stranger to public money. The Nguyens receive at least $1,187 monthly in welfare and supplemental security income..
Ryan’s health care is covered by Medicaid. This boy is gold-plated, an eggshell of a kid who took hundreds of thousands of taxpayer dollars to try to put together again.
Family lawyer Russell Van Camp likes to point out the half-dozen babies in Washington who have cost more money.
“Everyone tries to say from the hospital that this is costing much more for Baby Ryan than anyone else in the whole United States,” Van Camp said.
“That is an improper and incorrect impression people are getting. In the U.S., we don’t kill people just because they have expensive medical care.”
The family’s malpractice lawsuit against Sacred Heart was dismissed Friday.
In the Spokane motel room, Ryan shakes his head, a constant “no” whipping around the room. He sticks Pooh’s honey pot in his mouth, hangs other Pooh toys from his feet and treats a VCR like a new toy. Ryan rubs his eyes often. His smile is a magnet.
Ryan talks a lot, but he doesn’t say much. He repeats “Daddy” and “Mommy” in Vietnamese. He babbles.
“People have their own opinion,” Jack Nguyen said. “But don’t be sitting there without seeing him and saying I should let him die. He is a human being, just like anyone else.”
, DataTimes ILLUSTRATION: 2 photos (1 color)