The miraculous life of Jonathan Swain

Keith Morrison Correspondent • Profile

He arrived in this world six weeks premature, on March 19, 1983 and he wasn’t destined to stay for very long. They named him Jonathan.  Jonathan Swain.

No one knew then, no one had a clue, that such a little bundle would produce such an amazing, remarkable story; begun in disaster, buffeted by betrayals, and pushed to a conclusion which any fool would tell you must surely be impossible.

All they knew then was that the little bundle was in very big trouble.

Sheila Swain, Jonathan’s mother: They said, “This baby shouldn’t even be living, let alone bouncing up and down,” you know, he had a lot of energy. He was a fighter.

Jon’s mom, Sheila Swain, remembers how her son needed several blood transfusions to keep his tiny 4-lbs. body going, and how, even when he finally went home, he was far from healthy.

Sheila Swain: I kept asking the doctor: "What’s wrong with my baby? How come he’s always sick?"

For two years doctors didn’t have an answer. Finally, after a bout with pneumonia that almost killed Jon, a specialist ordered a series of painful invasive biopsies.

And then in June 1985, a couple of months after Jon turned 2 years old, came that phone call from the doctor.

Sheila Swain: And my heart just went out of my body. Like “Oh my God, no.” And he just kept saying, "I’m so sorry. I’m so, so sorry"

The doctor told Sheila that Jonathan had AIDS. One of the blood transfusions he received when he was just a couple of days old contained blood tainted with HIV. Jonathan became the first child in Colorado, one of the first in the U.S. to contract the disease, And this is the mid-‘80s, medical research into AIDS was in its infancy, treatments were virtually non-existent.  In 1985, for Jonathan Swain having AIDS meant only one thing: death.

Sheila Swain: The doctors told me to make the funeral arrangements for him. That he would never live to be three. And I did make funeral arrangements for him.

She wrote an obituary for someone who was yet to die. A small black and white photograph of a little boy in overalls, holding a ball, an oxygen tube in his tiny nostrils, his eyes staring quizzically at the camera. “Born into earthly life March 19, 1983,” it said underneath, “Departed into eternal life”... And then a blank space for the date which no one doubted would come soon.

Keith Morrison, Dateline correspondent: Did you tell him he was gonna die?

Sheila Swain: Mm-mmh. I wanted to prepare him so he wouldn’t be afraid, you know what I mean?

Morrison: But how do you do that?

Sheila Swain: I tried to just tell him that he was one of God’s little angels and, you know, that he wasn’t needed very long on this earth.

She had a lot to cope with.  Single mother, divorced, a family to raise, including Jon.  And now, as she tried to prepare for his death, she discovered that the news had gotten around. The media were knocking on Sheila’s door.

Too bad no one told Sheila “Beware notoriety.” AIDS had produced something like panic. All around Jonathan was a public conditioned by alarming news stories about this fatal disease. How easy was it to catch? Could touching spread AIDS? Or a sneeze?

Sheila Swain: Highly educated people were just acting very ignorant.

Morrison: When they saw you coming, you and your boy...

Sheila Swain: Oh, they would clear the way, definitely.

Morrison: What was the look on their face?

Sheila Swain: Fear.

Young Jon was not allowed into the local swimming pool. Two churches barred the entire family from attending Sunday services. And when Sheila prepared that death notice, several funeral parlors told her they wouldn’t accept Jon’s body.

And then there were the threats. Some neighbors wanted them gone.  Jon’s brother Josh remembers...

Josh Swain, Jon's older brother: One time a neighbor like across the courtyard actually was threatening physical violence against us, if we didn’t leave.

Josh was just two years older than Jon.  And it was hard to understand.

Josh Swain: You don’t understand why you were welcome yesterday and today you’re an outcast. That kinda’ gets you.

Josh vowed, as older brothers often do, to protect Jon from the furor that surrounded him for as long as his short life would allow.

Courtesy the Swain family Jonathan with his brother Josh, right

It would turn out to be a little more protection than he imagined. Despite the doctors’ predictions Jon lived to see his third birthday.

Mind you, he was frequently in the hospital, and his health was getting worse.

And yet, he never seemed to lose an unbridled energy. He’d be terribly sick, and yet still bouncing around, with his irresistible grin. He turned four... then five.

And somewhere along the way - as Jon continued to defy the odds - something changed. His mother started to focus not on his death, but his life. Which is why when the local school district refused to enroll Jon in pre-school, shy, reticent Sheila did something she never thought she could do:  She spoke up. For her son’s sake, she said, and for other children with AIDS.

She spoke to parents assuring them they had nothing to fear if Jon attended school with their kids. She weathered public rallies, tense school board meetings.

Sheila Swain: My saying was, “It’s you and me against the world.” I was willing to fight the world for him.

And finally, the school board relented. Sheila won! It was a proud day when Sheila accompanied Jon to his first day of school.

Sheila Swain: I’m more nervous than he is. I’ve got the first day jitters myself. Because he’s gotta succeed. He’s gotta do it.

With all that fear, controversy, excitement swirling around him, Jon came to understand his disease and his mother’s heroic battle for him pretty well for a 5-year-old.

In fact, an adult friend helped him write a children’s book that chronicled his brief life. A photo on page 16 showed a mother embracing her son, embracing his life, not his death.

BOOK EXCERPT the Swain family When Jonathan Swain was 6 years old, an adult friend helped him write a children’s book that chronicled his brief life with AIDS. Click on the links to see pages from the book. (in .PDFs) On his mother, Sheila On growing up different On his family and his brother Josh

“I love my mom,” the caption read underneath, “I think she is brave. She stood up for me.”

But none of this, life-affirming though it was, could change the fact that Jon, all experts still believed, would lose his life to AIDS in the very near future. No one could have suspected, least of all young Jonathan, that he was soon going to lose his mother as well.

Sheila Swain: I was only one person. I couldn’t do it all and I think I tried to do it all. And...I didn’t succeed.

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