Sara Siqueiros with Isabel, Jason, Jaxon, and Jason, Sr., at their home in Peoria, Ariz., on May 27, 2023.Photo:Jarod Opperman
Jarod Opperman
It’s a typically chaotic and lively day at the Siqueiros household in Peoria, Ariz., as Sara and Jason Siqueiros watch their three children — daughter, Isabel, 7, and twin sons, Jason and Jaxon, 4 — race around the house. “I’m so grateful for every single day with them,” says Sara.
But it wasn’t that long ago, when she wasn’t sure how many days they had left.
That’s because, over the last 5 years, all three of her children have undergone heart transplants after being diagnosed with restrictive cardiomyopathy. “It was terrifying for each one,” says Sara, a stay-at-home mom.
Jason, Jaxon and Isabel in their kitchen in Peoria, Ariz.Jarod Opperman
Isabel was the first child to be diagnosed in January 2018 — just nine weeks after the twins were born. At first, the pediatrician thought Isabel had the croup, and her parents feared it was progressing to pneumonia. But when she stopped urinating, Isabel was admitted to Phoenix Children’s Hospital.
“The next morning, we found out she had a rare heart failure condition called restrictive cardiomyopathy,” Sara recalls. “She was in heart failure, and more than likely, she was going to need a heart transplant.”
Isabel was added to the heart transplant list in March and received her new heart in May.
At the same time, Sara and Jason Sr., who works installing security screens, worried about the boys — who were both tested for restrictive cardiomyopathy at 3 and 6 months of age, with echocardiograms and bloodwork — and initially showed no signs of the disease.
“We were so happy, everything looked perfect, their hearts were functioning just fine,” Sara recalls. Then suddenly, just after the boys turned a year old, Jason suffered three cardiac arrests.
Jason Siqueiros in the hospital.Courtesy Sara Siqueiros
Courtesy Sara Siqueiros
He was diagnosed with restrictive cardiomyopathy, coupled with arrhythmia. “He was a little more extreme with his arrhythmia, as his heart stopped,” recalls Sara. “That’s how we found out about it.”
Further testing on Jaxon at the Phoenix Children’s Hospital emergency room, following Jason’s cardiac arrest episodes, confirmed that he too had restrictive cardiomyopathy.
“Sure enough, his heart function was declining. He was showing signs of the same arrhythmia as his brother," says Sara, recalling how both boys were given pacemakers to help control their condition. “It was terrifying finding out that there was something this severely wrong with them,” she adds.
Then, in June 2020, Jason suffered a 40-minute cardiac arrest at home. “I just tried to keep him alive until first responders got here," Sara says through tears, recalling how she started CPR while calling 911.
The Siqueiros kids in their backyard in Peoria, Ariz.Jarod Opperman
Jaxon’s transplant followed later that same year, in September. “With one, we were terrified — and with three, I didn’t know how we were going to make it through," says Sara. “It didn’t get any easier. The first time was really hard. And the last time was really hard.”
Still, she adds, “I wake up every single day just with so much gratitude, even if I just hear their little feet pitter pattering down the hall.”
The Siqueiros Family at home in Peoria, Ariz.Jarod Opperman
Sara has written letters to all three of their donor families through the Phoenix Children’s Hospital but so far none of them have responded. Even so, the Siqueiros make sure to honor their donor families frequently, including them in birthday and anniversary celebrations. “I have an extra cake,” says Sara. “I have extra chairs and plates sitting out for holidays. I have three extra stockings for Christmas. We plant forget-me-nots every spring. We include our donors in everything."
And there’s a lot to be thankful for. Cardiologist Dr. Bethany Wisotzkey, at Phoenix Children’s Hospital, says that it’s common for cardiomyopathy to run in families — and that the Siqueiros siblings are doing “fantastic."
“They’ve really come into their own,” Wisotzkey says. “They’re growing nicely and developing nicely. They’re active and playful and it’s really fun to watch them now. That’s one of the best parts of my job. We see [patients] when they’re at their worst, their sickest moments. The fun part is seeing them recovering, playing in the backyard, going to prom and graduating.”
Jason, Jaxon and and Isabel relaxing in the sun.Jarod Opperman
Isabel, Jaxon and Jason all left the hospital after their transplants with 12 to 15 medications, which have since been whittled down to two anti-rejection drugs each, twice a day — which the kids will take for the remainder of their lives.
All three children have echocardiograms, essentially heart ultrasounds, and bloodwork every three months. And once a year, they have cardiac catheterizations, where doctors take a sample from the heart to check for heart disease.
The children attend Leman Virtual Academy, where Isabel is going into second grade (“She’s absolutely crushing it,” Sara says.) and the boys will start kindergarten in August.
When they’re not in school, the trio loves playing on their slip and slide. The boys are into Marvel superheroes and WWE, while Isabel is obsessed with video games.
“They do normal kid stuff, which is just wonderful to me,” Sara says. “I worried about the traumas and everything that they’ve been through and if they would ever be able to fully act normal — and they do. They’re awesome and it’s exciting to see.”
source: people.com
