Sara Siqueiros cries softly when she recalls the medical battles her three children have endured in their short lives.
Isabel, 4, and twins Jason and Jaxon, 3, were diagnosed with restrictive cardiomyopathy, a condition where the heart’s chambers become stiff over time. This makes it harder for the heart to fill with blood.
Siqueiros and her husband, Jason Sr., were told in January 2018 about Isabel after her pediatrician dismissed her symptoms as croup.
“She just deteriorated,” Siqueiros recalled. “She stopped urinating and didn’t want to move. She was really tired. I was so certain she had pneumonia. I took her to the doctor at Phoenix Children’s Hospital and the next morning we were informed she had heart failure. She was not in very good shape.”
She stayed in the cardiovascular intensive care unit for 11 nights. Isabel went home to await her new heart, as she was listed in March 2018. She received her heart the following May 20.
“Isabel is doing so well,” she said. “She had her two-year catherization (biopsy and pressure check) and she’s rejection free. I’m homeschooling her and she’s impressing me so much. She’s reading and writing, and it’s all happened in the past few months. It’s amazing to see.”
Jason and Jaxon were 9 weeks old when the couple found out about Isabel, so the boys were evaluated right away. Doctors found no signs of restrictive cardiomyopathy.
In November 2018—the same year as Isabel’s transplant—Jason suffered the first of many cardiac arrests. Siqueiros was in the hospital with Isabel, who was suffering from a gastric issue, so her mom, Alice Estrada, was babysitting the boys.
Estrada woke up at 1 a.m. to find Jason had vomited and was ghost white. She called 911 and he was transported to Banner Thunderbird Medical Center.
“Two minutes after I arrived from Phoenix Children’s Hospital, he coded,” Siqueiros said.
“He coded in the hospital, and they were able to regain a pulse. They air evacuated him to Phoenix Children’s Hospital for emergency pacemaker surgery. They found out Jason had it, and they were told to get Jaxon in as soon as possible.
“Sure enough, he had the same issues in all of his tests—the EKG and echocardiogram—plus some electrical issues in the heart causing Jason to code.”
Jaxon received his pacemaker just days behind Jason. The boys did well for the first year on their pacemakers. Jaxon fell ill last winter and was slated for a transplant evaluation in March but the COVID-19 pandemic hit.
“The boys were stable, and their numbers had come down,” she said. “They were doing well. We decided to wait a couple months. If they get COVID, it wasn’t going to be good.
“On June 3, my son, Jason, suffered another sudden cardiac arrest—this time at home. He asked for grapes, turned around and just dropped to the floor,” she said, pausing to cry. “I started CPR, just pushing on his chest as frantically as I could.”
Estrada called 911 but was so frantic she couldn’t remember the address. The ambulance arrived, but Siqueiros couldn’t ride in the vehicle with her son due to COVID-19 restrictions.
“I didn’t know if my son survived,” she said. “They were still working on him in the ambulance. He hadn’t regained a pulse. The cardiac arrest was 40 minutes.
“Finally, they got a pulse back and air evacuated him by helicopter to Phoenix Children’s Hospital. I couldn’t go in the helicopter, either. I drove down to Phoenix Children’s Hospital, and they really weren’t sure if he had brain damage.”
The doctors performed an EEG to check his brain activity, and the signs were positive.
“This little miracle baby two days later opened his eyes and showed neurological signs,” she said. “Three weeks later, he got his new heart. There were a lot of ups and downs, but he made it to transplant.”
His heart transplant was at 1 p.m. June 30. The little boy suffered another cardiac arrest three hours before his transplant surgery.
Siqueiros said the episode was “really, really scary.”
“We had a successful heart transplant literally in the nick of time,” she said. “Jason was definitely my most intense and dramatic heart transplant.”
Jaxon received the call about his new heart on Sept. 22. He was doing fairly well until early September, when he lost his appetite and didn’t want to “run around with his brother and sister. Before it got too scary, we got our call,” she said.
After his transplant, he was out of the hospital in 10 days. He was walking the second day after his transplant.
Siqueiros said the surgeries have been harrowing, but she is relieved now that they seem to be doing well.
“We weren’t even expecting one at the beginning, let alone three,” she said. “It was a very scary time, but we’re very relieved now.
“They told us that about 10 years ago, the hearts would only last seven to 10 years. Now it’s 20 to 30 years or longer.”