Jonathan's journey: The boy who would not die

Robert Sanchez, Rocky Mountain News

Published June 30, 2004 at midnight

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Jonathan Swain did not die.

Of all the twists in his life, that is perhaps the strangest.

He did not die when all the other children died of the plague, as it was called, the killer he named his Secret Monster.

Chris Schneider © News

Still tired: Having worked 12 hours the day before, Jonathan rubs his eyes before eating a breakfast of steak and eggs and taking his AIDS medication on the morning of his 21st birthday. The celebratory roses are on hand, the cake would come later.

Jonathan Swain did not die even though his mother — curled up beside him in bed, careful not to crush his oxygen tube — told him that he would.

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Jesus was waiting, Sheila Swain told her youngest child. Heaven was made for little boys like him.

Heaven had no spoons filled with medication, no doctor visits. It had no fearful teachers, no classmates who ran away.

Heaven, best of all, did not have AIDS.

In 1983, Jonathan had come into the world six weeks premature, needing blood to battle a life-threatening infection. One bag of donated blood was tainted with a disease then considered the province of gay men, not helpless infants.

It was the first days of a growing panic. News was spreading that thousands of pints of donated blood, shipped between blood bank networks across the country, might be contaminated with something called acquired immune deficiency syndrome.

Doctors in Denver were stunned when they finally determined that Jonathan had received the bad blood, becoming the first Colorado child to be diagnosed with AIDS.

As Jonathan talks about his life today from his new home in the Utah desert, he knows the best part of his story, the most incredible part, is that it hasn't come to an end.

No one is certain why it turned out this way — not the medical researchers, not his doctors, not his parents, not his pregnant bride.

And not Jonathan himself, whose life story nearly spans the history of the AIDS epidemic in America.

Unlike hundreds of thousands of others, Jonathan Swain lived to tell the tale.

The weight room is nearly empty.

A towel boy walks through with his basket. A front-desk attendant talks on the phone. It is 9 a.m.

The clank of iron and the groan of exertion from one man is heard from the back room.

Weight is gradually added to the bar.

190.

200.

"Easy man, you're going to kill yourself," someone says.

Little miracle: Against all odds, Colorado's first AIDS baby now has a son, Jett Davis Swain, born July 27, 2004.

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On NPR: Reporter Robert Sanchez and Jonathan Swain talk about the story on All Things Considered.

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Maybe it's something about the way he walks through the room, confident, almost cocky, with his 16-inch biceps and bulging shoulders. Maybe it's his tight-fitting T-shirts and the bulge of his pectoral muscles.

Jonathan has been able to hide his secret well. His physique belies what's really going on inside his body.

It's two hours before work on the cooks' line at his father's restaurant. When the time comes, Jonathan will fire up his grill station and sear and smother steaks.

He'll be on his feet for 12 hours, working through the lunch rush — then a short break — and then the frenetic dinner shift.

After work, he goes home, walks through the door, hugs Amber, not yet his wife, and peels off his shirt, which reeks of onions, beef and sweat.

In the bathroom, he stands in front of the mirror, surveying his chiseled features. He takes a shower, towels off and puts on shorts. He flexes his biceps as he passes into the kitchen.

It is midnight of a new day last October.

He reaches for his nutritional supplements: the ones that keep the weight down, the ones that send more oxygen to the muscles, the ones that improve sight.

Death notice: Certain he would die soon, Jonathan's mother planned for his funeral.

Then he turns to the blue case with the blue and red and white pills, his $1,600-a-month drug cocktail, his lifeline against AIDS.

Epivir, the white diamond. Side effects: nausea, headache, fatigue, hair loss, insomnia.

Kaletra, the red oval. Side effects: nausea, vomiting, diarrhea, headache, weakness.

Viread, the blue triangle. Side effects: nausea, vomiting, diarrhea.

In all, there are nine pills and he downs them with a single gulp of water. Having done it most of his life, he's good at it.

Jonathan and Amber watch television and talk — how was work? what's going on in town? — and then go to bed.

Maybe tonight he will sleep through till morning. Or maybe tonight his stomach will cramp. Maybe he will throw up in the toilet until he falls asleep on the bathroom floor.

When that happens, Amber doesn't wake him. She covers him with a blanket and goes back to bed.

Jonathan awakes at 8 a.m. and is walking through the front door of the gym at 9.

Chris Schneider © News

A birthday wish: Jonathan laughs while eating cake on the evening of his 21st birthday, March 19, at his home in Vernal, Utah. On his 10th birthday, Jonathan blew out the candles on his cake and made a wish: that he would live to be 20.

"Easy man, you're going to kill yourself."

But Jonathan has been near death's edge much of his life.

Only a handful of friends at the restaurant where Jonathan works know his story.

Most don't know that a children's book was written about him. They don't know that — through the book — he became a popular figure in Japan when HIV began to spread there. They don't know about his well-documented struggle to enter public schools in Colorado as an AIDS child. They don't know that he's been on television and in newspapers around the world.

They don't know that he is a statistical anomaly who should have been dead long ago.

To them, he's 6-foot, 180 pounds. Good looking. Funny. Jon.

They don't know the central fact of his life: that 21 years earlier he had struggled from his first breath, that at Wheat Ridge's Lutheran Medical Center, when doctors pumped what they thought was life-saving blood into his tiny veins, Jonathan Dee Swain made medical history in Colorado.

Linda McConnell © News/1987

A hug for Mom: Jonathan, 4, plays piggyback with Sheila, before a doctor's appointment in August 1987.

On March 21, 1983, he received HIV.

Death a presence from the start

Sheila Swain felt the contraction in her abdomen and knew it was bad news. It was only 33 weeks, way too early.

This was to be her fourth child, so she knew the 36-week mark was key. Anytime before and the baby's life could be endangered.

The tightness grew like a wave inside her as she made her way to Lutheran. Dee, her husband, wasn't there to help. He had been gone for most of the pregnancy, running a restaurant in Lincoln, Neb.

She begged the baby not to come.

Doctors worked to stop the contractions. Don't move. Just rest. Concentrate on keeping that child inside you.

Still, at 8:05 p.m. on March 19, 1983, Jonathan arrived. He weighed 4 pounds, 2 ounces.

David L. Cornwell © News/1988

In the spotlight: Jonathan, right, and his brother Josh are surrounded by news photographers before Jonathan's first day of school in Jefferson County in August 1988. Many parents were fearful of Jonathan and didn't welcome his presence.

Little made sense the next morning when a doctor explained that her new son had stopped breathing during the night. Jonathan's lungs had filled with fluid. A tube had been stuck down his throat, and a ventilator was breathing for him.

More tests and the news got worse. Jonathan had sepsis, a blood infection. From the first day of Jonathan's life, death loomed.

A transfusion was the only way to save Jonathan, the doctor said. Dee had arrived for the delivery, traveling through the night from Nebraska. He wanted to be the donor. He argued with doctors, saying he was clean-living, free of drugs and alcohol.

Six feet 5 inches tall and 250 pounds of intimidation, Dee was the enforcer on the job, the man who could be relied on to slash budgets, cut jobs and get his employees to work as hard as he did. In short, Dee was used to getting what he wanted.

But not this time.

Four pouches of blood from the Belle Bonfils Memorial Blood Center had been tagged with tracking numbers and shipped to Lutheran, ready for the tiny infant.

The third bag of platelets was the killer.

That March, Colorado doctors were just beginning to read in professional journals of a surge in AIDS on both coasts. But there was a twist: The AIDS cases had spread beyond homosexual men.

Feeling down: Jonathan's face shows his hurt after he was rejected by a potential playmate in 1988.

The alarm sounded first in the hemophiliac community — those without a clotting agent in their blood who required frequent transfusions. In the summer of 1982, as gay-related immunodeficiency disease was renamed AIDS, hemophiliacs were getting their first pints of contaminated blood. HIV, which later was identified as the precursor to AIDS, would show up in their bodies that winter, prompting a nationwide warning and widespread panic.

The fear of AIDS was due in large part to the terrible way it killed. AIDS ravaged immune systems and could turn a common cold into an awful death. Victims turned gaunt, cheekbones seemingly piercing through skin. Once-virile men wasted into skeletons.

Two weeks before Jonathan's birth in March 1983, the Centers for Disease Control and Prevention in Atlanta sent a warning to hospitals and medical organizations nationwide: Blood transfusions carry an AIDS risk.

But as the blood flowed to Jonathan, AIDS wasn't on Sheila Swain's mind; saving her son was.

Jonathan's family would later tell friends that they couldn't stand the horrible irony of it all: Blood used to save Jonathan eventually could kill him.

Diagnosis elusive for always-sick boy

Two years later, in 1985, no one could determine what was wrong with the always-sick little boy.

"Failure to thrive," one doctor wrote in Jonathan's file.

Common colds lingered in Jonathan's body, turning a whimper of a cough into full body convulsions in just a few days.

A painful infection sprouted around his eye, swelling until it looked as if his eye might burst.

Bloody sores grew in Jonathan's mouth. He struggled for breath. He had eight ear infections in 12 months, pneumonia fives times and chronic diarrhea.

As doctors pored over his medical records, surgeons repeatedly opened up Jonathan in the search for a diagnosis. They checked his lungs, then his liver, then his lymph nodes.

No root cause for his illnesses could be established.

"My baby had five incisions in his body," Sheila later said, recalling that desperate time. She had divorced Dee the year before and was trying to get by on a waitress' salary. "They still couldn't tell me what was wrong."

Twenty-six months after Jonathan's birth, the doctors, in desperation, ordered another test.

That test came back positive.

Call confirms mother's worst fear

Jonathan was a spitfire of a boy. His brownish-blond hair formed a perfect bowl around his head, falling just below his eyebrows. His hair bounced up and down as he ran through rooms, slamming into walls. His playful giggles made others laugh, too.

Even when he was sick, when his lips turned blue and coughs made his tummy muscles hurt, Jonathan ran around the emergency room and asked nurses to play ball with him. Nothing held him back.

In 1985, the year Jonathan was in the emergency room six times, actor Rock Hudson died from AIDS-related complications, and parishioners in San Francisco worried they would get the dreaded disease from sharing communion cups.

Still, the possibility of AIDS in a child seemed like a bad dream to James Lustig, then the medical education director at Denver's Children's Hospital.

There were 15,719 diagnosed AIDS cases nationwide that year, according to the Centers for Disease Control and Prevention, but only 126 in Colorado.

The phone rang at Sheila Swain's Lakewood home June 21, 1985.

"Sheila, remember that AIDS thing we were talking about?" the doctor said.

Sheila's heart sank. Time froze.

"Sheila?"

The rest of the conversation evaporated in her ear. The only thing she'd remember were the words repeated over and over.

"I'm sorry," the doctor said. "I'm so sorry. I'm so sorry."

Family time: Jonathan and Amber snuggle on the bed while Amber's daughter, Alicia, 5, rests. Jonathan formed an intense bond with Amber after telling her that he has AIDS.

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