His Life in the Balance

updated 02/27/1995 at 01:00 AM EST

originally published 02/27/1995 01:00AM

RYAN NGUYEN WAS PALE BLUE, his heartbeat faint and his lungs were filled with blood when he was delivered by cesarean section last Oct. 27—six weeks premature and weighing 5 lbs. 14 ozs. Over the next 4 hours, doctors at Sacred Heart Medical Center in Spokane, Wash., struggled to help the newborn survive and keep his lungs working by squeezing air through his mouth and nostrils with a balloon ventilator. "This baby was close to stillborn," says Dr. Carl Bodenstein, head of the delivery team. "We made heroic efforts to keep him alive."

Now, four months later, Ryan still needs round-the-clock medical care for a range of ailments including damaged kidneys, partially unformed intestines and possible brain damage due to lack of oxygen at birth. He also remains at the center of an emotionally charged public debate over two thorny questions: How extensively should technology be used in prolonging someone's life? And in the case of an infant, who should make that decision—doctors or parents?

So far, Ryan's parents seem to have been vindicated in their insistence that every possible medical effort be made to keep their son alive. Last November they refused to allow doctors at Sacred Heart to let their son die by removing him from dialysis. Instead, after a difficult search, they found another hospital to care for him—and the boy's condition, still serious, has been improving ever since. "I couldn't believe that I had to beg for my son's life here in the United States," says Ryan's father, Nghia Nguyen, 32, a Vietnam native who came to the U.S. in 1975. "It's supposed to be freedom, liberty and justice for all, right?"

Ryan's problems began in July 1994, when his mother, Darla, 31, a full-blooded Sioux from Montana, was five months pregnant. Tests revealed that her amniotic fluid was inexplicably low, which raised the risk of infection for both mother and child. Doctors first ordered bed rest, but on Oct. 19, after her water broke, they checked her into Sacred Heart for constant monitoring. Eight days later she went into premature labor. "It felt like someone was boxing the inside of my stomach," Darla says. "It was very painful."

Nghia rushed to the hospital to be by her side. Not only was the baby born early but Darla had suffered an acute abruption during the delivery, meaning her placenta had disconnected from the uterine wall, filling her abdomen and Ryan's lungs with blood. "I knew he was going to have problems," Nghia says. "But I thought, 'It doesn't matter, he's my son.' "

The Nguyens are Catholics and cite their faith as reason for believing that all available means should be used to keep Ryan alive. "Every day at the hospital we prayed with our baby. We say, 'God is here with you. There is angel here to protect you, son,' " says Nghia in heavily accented English.

Apart from Ryan's immediate troubles, his Sacred Heart doctors also came to believe that he needed a kidney transplant for long-term survival, and that could not be attempted until he was at least 2 years old. Bodenstein and his colleagues ultimately concluded it would be cruel to subject Ryan to continued dialysis until then, especially since his multiple health problems made it questionable whether he would survive a transplant in any case. Despite objections from the Nguyens, they decided to take Ryan off dialysis. "If the life of a baby is to be full of chronic suffering and pain, who is to say the soul isn't calling out for death?" says Bodenstein. "The parents will accept anything as long as the baby lives. But who speaks for the baby?"

The Nguyens sought a court order forcing Sacred Heart to continue dialysis. Meanwhile they searched frantically for another hospital where they could move their baby. But three other medical centers refused to admit him, concurring with the judgment of Sacred Heart physicians that his case was hopeless. Then Randall Jenkins, director of kidney care at Legacy Emanuel Children's Hospital in Portland, Ore., offered to take him in. "If a child is vegetative, I don't think dialysis is a good thing to do," says Jenkins. "But Ryan is not vegetative. Since no one truly knows his future, I thought we ought to do whatever we could for him."

On Dec. 13, Ryan was flown 400 miles from Spokane to Portland on a special plane equipped for medical emergencies. Three days later, the condition of Ryan's kidneys suddenly improved, and he was removed from dialysis indefinitely. Doctors at Legacy Emanuel believe Ryan's kidney problems may have been caused by birth shock and now hope he won't need a transplant, even though his kidney function is still below normal.

But Ryan still faces major medical problems, especially involving his blocked intestine. Despite surgery to improve the functioning of his bowels, he remains extremely vulnerable to infection. He is dependent on intravenous feeding because he is able to take only a few ounces of predigested formula each day. And he faces the possibility of cerebral palsy or other neurological disorders resulting from brain trauma at birth. But Jenkins is optimistic. "We're hoping the brain injury he suffered will not affect his life," he says. "Time will tell."

For Ryan's parents, a major complication is money. Darla lost her health benefits and has yet to receive any disability benefits since quitting her $6.35-an-hour job on a computer factory assembly line in January 1994 because of carpal tunnel syndrome in her wrists, a condition that also made it difficult for her to hold her first son, Austin, then 6 months old. Nghia had been doing occasional odd jobs, but because of Darla's disability he stayed home full-time to care for Austin. Then, in May 1994, the Nguyens were evicted from a basement apartment in Spokane and during most of Darla's pregnancy kept moving from the home of one relative or friend to another.

Now the Nguyens have decided to take Sacred Heart hospital to court. They contend Bodenstein and his colleagues were willing to let Ryan die because his care cost $2,000 a day, of which Medicaid paid only 70 percent. The couple's attorney, Russell Van Camp, suggests there may have been another motive as well. "Sacred Heart wanted nature to take its course because Ryan didn't have blue eyes and blond hair," he says.

Bodenstein vehemently denies that either money or race had anything to do with how Sacred Heart treated Ryan. He says 60 percent of his patients are on public assistance and are treated on a charitable basis by the hospital. He also argues that Ryan would not be alive today were it not for the conscientious care he received at Sacred Heart. "I feel terrible for the family in this case, but Van Camp is a different story," says Bodenstein. "His allegations are outrageous. He is outrageous."

Shy, Van Camp surely is not. A personal injury specialist who once joked that his firm should be called Torts-R-Us, Van Camp, 48, proudly displays a sign in his office reading, "It's not whether you win or lose. It's how much money you make." He has vowed to sue Sacred Heart on the grounds that doctors inflicted pain and suffering on Ryan during the delivery and by their later decision to take him off dialysis. He says he expects to seek a settlement "well into seven figures," of which he would take up to 30 percent. "Cases like this don't come along every day," he says.

No one at Legacy Emanuel will discuss Ryan's costs at their hospital. But doctors report that the infant may be able to go home with his parents in a few weeks, even though he will still need to be fed intravenously and monitored 24 hours a day by a rotating crew of nurses paid for by Medicaid. In early January, the Nguyens, who receive welfare benefits totaling $547 a month, moved into a duplex apartment near the hospital. Their $675-a-month rent is being picked up by their attorney. "The lawsuit will be filed when baby Ryan gets home," says Van Camp. "It will be a homecoming present."

Whatever the outcome of that suit, Victoria DeVito, a neonatal specialist at Legacy Emanuel, says Ryan is well enough now so that the question of who has a right to make life-and-death decisions for him is moot. "This baby," DeVito says, "speaks for himself."

DAVID GROGAN
BILL DONAHUE in Portland and MIRO CERNETIG in Spokane

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