Nine weeks after giving birth to twin sons, life was a blur of diaper changes, feedings, laundry and sleepless nights for Sara and Jason Siqueiros.
In the midst of the blissful chaos at their Peoria, Arizona, home, Sara noticed that their 2-year-old daughter, Isabel, wasn’t feeling well. Based on the initial symptoms, the pediatrician said Isabel only had a respiratory virus and prescribed an oral steroid.
Instead of recovering, Isabel became more ill. Her face swelled and she stopped urinating. Sara strapped Isabel into her car seat and took her to a hospital in Phoenix. Further testing showed that Isabel had a rare form of heart failure called restrictive cardiomyopathy.
The condition meant that chambers of her heart were becoming stiff, making it more difficult for the heart to function properly. It’s the rarest form of cardiomyopathy. Isabel’s case was so severe that it had caused her liver to retain fluid, enlarging it to five times its normal size.
She needed a new heart. Already exhausted and overwhelmed, Sara and Jason felt as if time stopped when they heard the words “heart transplant.”
“We thought we had a normal, happy life with our three wonderful kids,” Sara said. “Then all of a sudden, something that happens on TV or to other families was happening to us.”
Because restrictive cardiomyopathy can have a genetic link, the Siqueiros had the twins – Jason and Jaxon – checked for symptoms at 3 months and 6 months of age. Both boys were symptom-free on both exams.
In May 2018, five months after Isabel was diagnosed, she received her new heart. Sara called it a “perfect transplant.” Isabel was back home less than two weeks after the surgery and, soon after, “she was rocking post-transplant life,” Sara said.
Six months after her heart transplant, Isabel started experiencing gastrointestinal issues. It was a side effect of her multiple transplant medications. Sara called her mom to watch the twins while she and her husband took Isabel to Phoenix Children’s Hospital. She was admitted.
In the middle of the night, Sara’s mom called: Baby Jason woke up pale and vomiting. He was being rushed to a hospital close to their home. Sara and her husband Jason grabbed their things and rushed from one hospital to another.
It can’t be that big a deal, Sara thought. They already checked for restrictive cardiomyopathy and there was no problem.
Minutes later – and just weeks after his first birthday – Jason had his first cardiac arrest.
Sara was holding Jason when he had his second.
Jason was airlifted to the same hospital as Isabel; she was on the fifth floor and he was on the sixth. Sara was racing back and forth checking on her children. She was with Isabel when Jason had another cardiac arrest.
To keep Jason alive, doctors connected him to a machine that performed the work of his heart and lungs.
Additional tests showed that Jason had signs of restrictive cardiomyopathy. Cardiologists did an emergency procedure to implant a pacemaker to get his heart back into a healthy rhythm.
Once things calmed, Jaxon was tested. He, too, needed a pacemaker.
In November 2018, all three siblings were in the hospital. Sara felt hopeless as she raced between hospital rooms, always fearing she was in the wrong place. She often ducked into the bathroom to cry.
“Be positive,” she told herself. “Everything is going to be OK.” She kept repeating those phrases, no matter whether she believed it.
Weeks later, everyone was back home. All remained well for everyone – until June 2020.
Baby Jason’s heart stopped again. Sara performed CPR in the kitchen until an ambulance arrived. He was stabilized at the nearby hospital, then airlifted to the hospital in Phoenix.
Doctors told Sara and Jason to prepare themselves for the worst. She imagined having to pick out a funeral outfit.
Three days later, baby Jason was well enough to be added to the transplant list. Three weeks later, a match was found. Hours before the surgery, his heart stopped again. The transplant team still managed to get the boy his new heart.
Three months later, Jaxon received a new heart. Sara half-jokingly said that of the three, “Jaxon was our only, ‘routine transplant.'”
Dr. Bethany Wisotzkey is a pediatric cardiologist who specializes in heart failure. She was part of the transplant team that treated the children. It’s a unique story, of course, because there are three siblings, all from the same family, who needed transplants at such a young age. Another aspect is how quickly each was matched to a donor heart.
“Some families are, unfortunately, in the hospital waiting for months and months to get heart transplants,” she said.
Three years later, all three children are thriving.
Isabel is in second grade, learning to write in cursive and making music playlists on YouTube; she loves rainbows and unicorns and Sara describes her as a “fearless and powerful” 8-year-old. Jason is a fan of WWE wrestling and Jaxon loves video games; both boys love listening to music and dancing. The twins will soon turn 6.
Sara has shared her family’s story on social media, and in television and newspaper interviews. She’s received countless messages from followers who registered as organ donors after learning about how heart transplants saved Isabel, Jason and Jaxon.
Sara makes sure her kids understand as much as they can about their condition, the need for healthy lifestyles and a daily medication regimen.
“Luckily, they all get to go through it together,” she said. “They are all very aware that they have special hearts.”
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
