When Keegan Passos was 7 years old, he started writing a song.
He told his mother, Jullie Passos, about it, and she expected "a kid song" — something silly or lighthearted. Instead, the boy sang about angels and knowing he’s not alone.
The lyrics stunned his mother.
"He starts telling me the words and I’m going, ‘You need to stop,’" Jullie Passos said during a recent interview in the family’s Waipahu living room.
The tune, "Angels Hovering Above Us," touches on themes of mortality, letting go and maintaining a closeness with loved ones who have died.
Keegan, now 16, was born with an extremely rare heart defect, a complex condition called tetralogy of fallot with pulmonary atresia. The defect makes up only about 2 percent of congenital heart disease cases.
Doctors found holes in his heart while he was still in the womb. Expecting his face to be blue at birth, the doctors had planned to transport Keegan to California for surgery. Instead, he was delivered with pink cheeks.
"The doctor said it was amazing," his mom recalled. "Basically, he was born missing the main pulmonary artery going from his heart to his lungs. To survive, his heart adapted and created tiny arteries, lots of them," which staved off any blue hue.
Those arteries, which are not following the growth patterns of normal arteries, have had to be addressed in a number of surgical procedures.
Keegan has undergone three open-heart operations — his first when he was 6 months old — as well as two pacemaker installations, eight or nine intervention surgeries for matters such as putting stents (wire frames) in place to help his heart function efficiently, and about 25 pre- or postoperative explorations.
"You think about everything that Keegan’s been through," Passos said. "He’s already come to terms with the fact that, ‘When I go, it’s OK, Mom. I’m going to be watching over you.’"
Last month Keegan was selected to serve as the state’s representative for the 2014 Children’s Miracle Network Hospitals Champions program.
The program brings together children from across the United States who have tackled severe medical challenges. They represent the 17 million children treated every year at the 170 Children’s Miracle Network Hospitals, including Kapiolani Medical Center for Women & Children.
Through the annual Champions program, which began in 1996, the children serve as ambassadors and support fundraising campaigns.
Keegan’s duties will culminate in November when the champions and their families travel to Disney World and Washington, D.C., for a conference.
Despite his medical challenges, Keegan is an upbeat kid, devoted to mentoring younger cardiac patients at Kapiolani.
Once, on the eve of a surgery, Keegan attended a Kardiac Kids mentor session wearing a hospital gown, with an IV port already hooked up. "The kids were like, ‘Why are you here, isn’t that sore?’" Passos said. Her son responded, "‘Yeah, it’s sore, but … I promised you guys that I would be here. … I’m a mentor; I want to be here for you.’"
When he was selected as the state’s Miracle Network Hospitals champion, Keegan said, "My first thought was, ‘So I get to think and help other kids like me, I get to give back more?’"
He added that he’s eager to get started because he knows the money he helps raise will stay in Hawaii.
How did his mother react?
"She cried," Keegan said.
Passos chimed in: "Keegan’s always thought of giving back. … He’s never been the type of kid to say, ‘Oh, pity me.’ He’s always tried to see the bright side of things, and the joke is always there’s never enough hours in a day for him because he truly, truly lives every minute to the end of the day."
A few years after shocking his mom with a song about angels, Keegan tossed her another stunner.
"I mentioned something about somebody feeling like they weren’t sure … how long they were going to live, (and) he goes, ‘Oh, yeah, I feel like that,’" Passos said. "He goes, ‘Well, you know, every night when I lay down and I go to sleep, right before I fall asleep I think to myself, ‘Is this going to be it? Am I going to wake up tomorrow, or is this my last day? Did I do everything that I wanted to do?’"
The only long-term fix for Keegan’s condition is a heart and lung transplant, which Passos said even doctors shy away from mentioning. Keegan’s father, Jay Passos, said that out of every 3 surgeries, 2 result in complications and 1 of those 2 in death.
Kids with heart disease don’t experience remission as some cancer patients do, Jullie Passos said, so they face lifelong challenges.
"He’s never going to be cleared for heart disease. … There’s no such thing," she said. "He looks normal on the outside, but he’s not, and that’s what makes it harder."
Each Children’s Miracle Network Champion designs a pin that represents his journey. Keegan’s is a turtle with a red heart as its shell. The pin symbolizes long life, health and Hawaii.
Keegan faced the reality of his mortality a few years ago when a 17-year-old mentor of his from California, affectionately known as Chewy, died during an unscheduled heart surgery.
Chewy’s death served as inspiration for Keegan to finish the song he started when he was younger.
He penned a verse about his late great-grandfather, who collected marbles.
Now when the family finds a marble — and they do so with odd frequency — they take it as a message from the old man.
Another verse is about Keegan catching a glimpse of Chewy while under anesthesia.
"In one of my surgeries after Chewy had passed away, I saw the train going like it was going to pick me up," Keegan explained. "And before I got on, Chewy had grabbed me by the shoulder and told me it wasn’t my time, and he took me back to my body."
The song starts off, "Every day I will see angels hovering above me, and I know that I’m not alone. You’ll always be there for me, when I turn around, my angel’s love will surround me. And I know I’m not alone."
The last line, which Jullie Passos said gets her every time, addresses the listener: "Every day you will see that I am hovering above you." It continues, "And you’ll know that you’re not alone."
