Most parents of toddlers worry about sleep habits and sniffles, but heart failure isn’t usually a concern.
It certainly wasn’t on the Thomases’ radar when their 2-year-old son went into sudden cardiac arrest in the middle of the night at their Illinois home.
When the child woke up screaming, his parents ran into the room.
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“Hearing him scream out was alarming, as he usually slept soundly, and it was a horrible cry,” Stephanie Thomas told Fox News Digital.
“When I went into his room, he continued to scream out and then face-plant into his crib.”
At first, the Thomases thought their son was just having a night terror, so Stephanie — who is a clinical dietitian at OSF HealthCare Children’s Hospital of Illinois — sat next to his crib with her hand on his back, trying to calm him down.
“When he finally settled, I could feel his breathing slowly come to a stop,” she recalled. “I picked him up out of his crib and placed him on the floor. With him being unresponsive, I felt for a pulse and started CPR.”
“I was petrified and confused about how my seemingly healthy 2-year-old was in this situation.”
“I was petrified and confused about how my seemingly healthy 2-year-old was in this situation.”
As Stephanie performed CPR, her husband, Kris, called 911.
Emergency responders rushed the boy to OSF HealthCare. After 11 days of testing, he was diagnosed with Brugada syndrome, a very rare heart condition that can cause sudden cardiac arrest and death.
Though there can be some signs of Brugada syndrome, such as fainting or passing out, the condition is often not discovered until cardiac arrest occurs.
The Thomases’ son had a similar incident about a month before the cardiac arrest, which they now believe may have been his first episode.
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“He woke up in the middle of the night with a horrible scream, had some gasping and was hard to calm,” Stephanie recalled. “It was only a short period, and once he calmed, he seemed ‘normal.’ We assumed it was a night terror.”
As Brugada syndrome is often inherited, the Thomases were both tested for genetic abnormalities, but it was determined that their son’s syndrome is a “mosaic defect,” which is when there are two or more genetically different sets of cells in the body.
The OSF team implanted the young boy with an EV-ICD (extravascular implantable cardioverter-defibrillator), which is positioned outside the heart’s blood vessels. It is designed to detect and correct any abnormal heart rhythms.
This was the first time the device was implanted in a child at such a young age, the hospital noted in a press release.
Since the first episode, the Thomases’ son has been hospitalized six more times. Each time an abnormal heart rhythm is detected, the EV-ICD delivers a “life-saving shock” to the boy’s heart.
“Our son acts and appears healthy more than 99% of the time, until his heart gets into an arrhythmia that his body and medication cannot manage on their own,” Stephanie told Fox News Digital. “In these cases, he receives a shock from his ICD.”
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The boy has been readmitted to the hospital due to arrhythmias and medication titration seven times since his initial discharge, his mother added.
Sunita Ferns, M.D., a pediatric electrophysiologist at OSF HealthCare Saint Francis Medical Center who is treating the Thomases’ son, noted that her young patient is now “married to cardiology.”
“We monitor these devices constantly. If we see any arrhythmia in the background, despite the medication he’s on, we can offer him other technologies,” Dr. Ferns said in the OSF press release.
“Ablative technologies can help modify the substrate, which is the tissue that’s responsible for the bad rhythm.”
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To help control his arrhythmias, the boy also takes a compounded oral medication every six hours, which he will take for the rest of his life.
The parents said it can be challenging to navigate the episodes with a 2-year-old who can’t understand what’s happening.
“The hardest part is when he says things like, ‘I can’t use the elephant blankie because it shocked me,’” Stephanie said. “He makes these associations between being shocked and the objects or places around him.”
There are specific triggers for the boy’s arrhythmias, the Thomases have learned, such as low-grade fevers and even slight illnesses, like a cold.
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“It is vital that we keep him as healthy as we can — which can be challenging with him being an active 2-year-old and having a 4-year-old,” Stephanie said.
“We make sure that he stays up to date on his and our whole family’s vaccines. We do our best to tightly regulate any temperatures.”
“It is vital that we keep him as healthy as we can.”
The Thomases now aim to raise awareness of the importance of having CPR training, being alert to warning signs and putting an emergency plan in place.
As a healthcare employee, Stephanie has maintained her Basic Life Support (BLS) certification for over 10 years.
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“I have always said that I work with doctors and nurses, so felt that this was something I would never use — but the doctors and nurses were not in my house the night my son went into cardiac arrest, so it was left to me.”
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