Four months after doctors told his parents they could do nothing to save him, Ryan Nguyen is going home - healthier, stronger and with a will to survive.
Born eight weeks prematurely with kidney damage, a bowel obstruction and possible brain damage, Ryan was at the center of a battle between his parents and doctors over how to treat the critically ill child.Nghia and Darla Nguyen set aside their worst fears and held firmly to every wisp of hope. Now they're busy preparing for their son's homecoming Monday.
"We've ordered a crib. We are overjoyed that he gets to come home. It's a day we've been waiting for for so long," said Mrs. Nguyen.
Since his birth Oct. 27, Ryan has more than doubled his weight to 14 pounds-plus, and he's quick to smile at visitors at Legacy Emanuel Hospital in Portland.
Inside the neonatal special care unit, an audiotape plays love songs at the top of Ryan's crib as the Nguyens practice feeding him intravenously, checking his blood pressure and temperature and giving him medication.
Ryan was born by Caesarean section at Sacred Heart Medical Center in Spokane. The placenta had torn away from his mother's uterine wall, causing the baby to lose blood and suffer damage to his vital organs.
Doctors there doubted Ryan could survive and, the Nguyens say, suggested he be taken off life-support and be allowed to die.
Continuing dialysis would be immoral, Sacred Heart officials said, and would only prolong Ryan's pain. Dr. Hrair Garabedian, director of the hospital's neonatal intensive care unit, thought Ryan couldn't live more than a week without dialysis.
In early November, Ryan was disconnected from dialysis machines.
"We were both very furious about it," Mrs. Nguyen said. "We didn't believe them. We knew that all the things they were telling us weren't true . . . that he was a vegetable. He was moving his arms and legs and trying to look at us."
The Nguyens obtained an injunction from Spokane County Superior Court on Nov. 22 ordering the hospital to resume dialysis.
They also began searching for a hospital willing to admit their baby. They were rejected by three hospitals before Dr. Randall D. Jenkins, a pediatric kidney specialist at Emanuel, read about them and offered to treat Ryan.
"I knew that the hospital in Spokane . . . lacked a children's kidney service," Jenkins said. "Since our hospital is well equipped for handling infant dialysis, there was no reason not to offer help.
"Knowing that Ryan was alert, with a good heart and lungs, and a strong, loving family allowed for the early prediction that Ryan was likely to survive."
Unemployed and emotionally spent, the Nguyens found renewed faith. With an outpouring of public support, they also were able to resettle just across the Columbia River, in Vancouver, Wash., to be near Ryan.
They have their own theories about the treatment they received at Sacred Heart. They claim the hospital botched the baby's delivery and not only wanted to cover up the alleged malpractice but also were concerned about the family's inability to pay for extensive medical care.
Their lawyer, Russell Van Camp, is preparing a lawsuit alleging Sacred Heart violated Ryan's constitutional rights to live and is guilty of negligence.
Van Camp said the case "shows what the medical profession and the ethicists are trying to do to us. They have been and they are making life and death decisions without the input of the person who is affected or their relatives."
Johnny Cox, medical ethicist at Sacred Heart, said financial concerns were not a factor in Ryan's treatment and all medical decisions were based "solely on the child's best interests."
While she's not looking forward to a courtroom fight with Sacred Heart, Mrs. Nguyen believes it's unavoidable.
"I don't want these doctors to do the same thing to another family," she said. "A baby deserves to live if he has a chance to."