How a 16-year-old heart patient is inspiring the community to live life fully
Keegan Passos has had a surgery or invasive medical procedure every single year of his 16-year-old life.
But that hasn’t stopped him from getting the most out of life. His motto is “Live every day like it’s your last.” When Keegan tells me that, his dad Jay adds, “For him, it really could be. You just never know.”
Keegan was born with a major heart defect (called tetralogy of fallot and pulmonary atresia) that requires constant monitoring and intervention. He isn’t allowed to exercise, and he constantly struggles to keep his weight up.
“You know we try to always remain very positive,” said Keegan’s mom, Jullie. “The one time I lost it and broke down was one night when Keegan was going to sleep and he looked lost in thought and I asked what he was thinking about. He responded that he was wondering if it could be his last moment in life and how he considers that a lot when he goes to sleep.”
That sounds incredibly deep for a 16-year-old, but that’s just the type of kid Keegan is.
His optimism, tenacity and bravery earned him the title of Hawaii’s 2014 Children’s Miracle Network champion ambassador. One champion is selected from each state, and throughout the year the ambassadors help to raise awareness about children’s hospitals and the importance of donating to support the important work of pediatric centers.
I recently sat down with Keegan and his parents at their Waikele home to learn more about the inspiring teen.
When I asked Keegan to explain his condition, he told me, “I’m pretty messed up inside.”
“I had three surgeries before I was 3 and a pacemaker when I was 5 after my heart wasn’t working right after having tooth extraction surgery. I wish I could draw you a picture. I also have seizures, Tourette’s syndrome and ADHD (attention deficit hyperactivity disorder).
Keegan’s parents knew something was wrong before he was born.
Keegan’s mom was Rh negative while pregnant, a condition that means her blood rejects her husband’s Rh positive blood. Because of the condition, she had to have shots throughout the pregnancy and her doctor ordered bed rest.
At her six-month ultrasound check, doctors learned Keegan had something wrong with his heart. When Jullie gave birth at Kapiolani Medical Center for Women & Children, five weeks early, there was a team of specialists on hand.
About the same time Jullie was on bed rest, she discovered her job was ending. The family decided she would stay home to care for Keegan.
Sitting with the family in their living room, I’m amazed at how healthy and normal Keegan looks. I tell him as much.
He responds, “I’m lucky. A lot of kids with my condition have died. I’m grateful that I’m the 1 percent that has this rare condition and is functioning OK.”
Keegan’s parents agree that he’s lucky. His dad told me that his son is probably one of the few kids that sincerely doesn’t care for a gift for Christmas. Keegan has asked for some new pencils under the tree because, he says, he already has what he wants: a family that loves him and another day to spend living life to the fullest.
Being808: So, what’s it like to be the Children’s Miracle Network 2014 champion?
Keegan: I feel honored. I tell people what it’s like to have a heart condition and how their money is put to good use if they donate to Children’s Miracle Network. In November, I was able to tour with the other champions to Washington D.C., and Orlando, Florida.
Keegan’s dad: That was an awesome trip! Delta Airlines put us in a special plane called “Champions One,” so instead of “Air Force One” you have all these “miracle” kids in a plane together and they treated us so well. It was work though, we did one appearance after another and got to visit and meet other amazing kids with conditions like progeria, cancer, a rare parasitic meningitis.
Keegan: We even got to meet First Lady Michelle Obama and her dogs on our White House tour. The little kids were surrounding her so I kind of hung back but we had someone give the President and the Secret Service agents one of the heart pins I designed (see photo). I designed that honu; a turtle pin to represent humility, long life and the spirit within.
Being808: So being a special champion, will this affect what future career you choose?
Keegan: I’ve created a sketch of a Cardiac House similar to the Ronald McDonald’s house we stay at in San Diego but built to accommodate the whole extended family. Hawaii families are huge and everyone goes to the hospital, not just mom and dad. The house I’m designing would fit everyone. Eight rooms that fit six to seven people with a hospital bed since I really needed that after surgery, ADA compliant with roll-out beds in the closets for family. I have the Cardiac House built in the game Minecraft so I can see how it would work in practice. I just need someone to financially back the project and make blueprints later. It can be a challenge when my arm tic will make a straight line crooked and I’ll have to start over.
Being808: What do you do for fun?
Keegan: I like to hunt for bugs, play video games, other stuff. I like to look under logs for bugs or if I go to the beach I’ll search tide pools. I have a metal detector and I found a lady’s expensive wedding ring. That was exciting, she was so grateful I found it!
Being808: Do you have a special workout or diet?
Keegan: I’m not allowed to exercise. I’m supposed to be really easy on my body, try not to stress out. My body uses all of its energy on running my heart so I’m on the “see food” diet; I get to eat what I want. I have to make sure I have enough energy so I take a snack and drink when I go for a long walk. My parents are always aware of how I’m feeling because I sometimes push myself too hard and tire out. I babysat yesterday and I was so tired afterwards. I’m on nine meds a day so my mom makes sure I keep on top of that.
Being808 (to Keegan’s mom): His care must get expensive, how do you manage on one income?
Keegan’s mom: That’s the thing, I liked being on the Champions trip with other parents who “get it,” who know the day-to-day struggle of doctor’s visits, surgeries. It’s not easy and so money becomes unimportant. Our family really needs to focus on making memories, being together.
Sometimes I hear a kid complain a gift is the wrong color or something and you shake your head cause your child only wants to live and do normal things; the material things don’t matter. We have all we really need, you know? Keegan’s insurance covers his trips to San Diego for his surgery with one adult companion. We’ve had the HUGS organization (Hugs, Understanding and Group Support) or Variety Club in the past help for the additional expense to add a ticket for dad and sister so we can travel as a family.
Being808: Is it hard to stay positive? Who’s in your support system?
Keegan: I have moments when my anxiety is bad. My parents are very positive and try to give me a normal life. My mom doesn’t let me get away with stuff or treat me very different from my sister. I’m just lucky our family is close and they’re always there for me as well as the friends from the Kardiac Kids group and my doctors.
Being808: Why should our readers give to Children’s Miracle Network?
Keegan’s mom: If you donate to Children’s Miracle Network in Hawaii your money is directly going to help kids in Hawaii like Keegan. Kapiolani Medical Center is the only Children’s Miracle Network hospital here and they also service the entire Pacific Rim. We’re far from some specialists we need so Hawaii kids have to fly back and forth to Rady’s Hospital in San Diego, which partners with Kapiolani. Kapiolani is our lifeline. I don’t know what we’d do without them. They are aware that you don’t just heal the body, you heal the soul and they have extras like a playroom and Tucker the therapy dog. Not every hospital does that much for its patients.
Being808: What future surgeries will Keegan need?
Keegan’s dad: He’s good now. He finally got the clearance to not have to fly to Rady’s hospital to check his arteries since this last reading between Kapiolani and Rady’s charts had the same result, Kapiolani will follow up and monitor him.
Ultimately, the only long-term solution that is very risky, is having a heart and lung, possibly double lung transplant. We’d have to relocate to the mainland if that happens but I’m not comfortable with the survival rate and it’s a last resort. Once we do that, there’s no turning back and it might not help. It’s all about quality of life.
He’s doing good now so we take it day-by-day and live in the moment.
If you want to help kids like Keegan, see Keegan’s champions profile page.
You can also hear from Keegan and his parents in this video:
Denise Lau is a content specialist at HMSA and blogs about mommyhood with her #808moms series. She has her hands full with a precocious, artistic daughter and active son. Her goal is to be healthy and fit while her kids become successful, well-rounded adults. Follow her on Twitter.