Bridget Early
The Indianapolis Star
The day Vera Uber’s heart stopped was like most days in the Uber household – busy.
The four-year-old spent the morning with her family at a bridal shower, neatly dressed and on her best behavior. But like most four-year-olds, her patience had its limits, so after the festivities ended, she and her father Matt Uber took some time to decompress.
The two ordered Wendy’s for lunch and raced around the kitchen and dining room, the remains of their meal forgotten in the excitement. Vera’s laughter filled the house.
Until, abruptly, a thud.
Everything went quiet. No footsteps. No giggles. Matt rounded the corner.
Vera was slumped, motionless, on the floor.
At first, Matt worried that Vera had hit her head in the chase.
But something seemed off. There was no sign of any injury. She was pale and getting paler with every second. Then, he realized: Vera wasn’t breathing.
Matt panicked.
“There was nothing normal about it,” Matt said, “and we needed to do something.”
‘Stayin’ alive’
Matt shouted for his 16-year-old daughter Nora to call 9-1-1. Then, he turned back to Vera, whom he’d laid on the kitchen floor.
Matt, who’d never had CPR training, wracked his brain for something, anything, that could help him. Then, from somewhere in his memory:
“Ah, ha, ha, ha, stayin’ alive, stayin’ alive!”
He’s not sure how or why, but Matt said the first thing he could think of was an opening scene from the hit comedy series “The Office.”
In the episode, a guest trainer teaches basic first aid, including CPR compressions and breaths, to the staff of Dunder Mifflin Paper Company. She tells the staffers to keep pace using The Bee Gees’ song “Stayin’ Alive,” which has the same pulse as a human heart rate. The training deteriorates as the staff launches into a rendition of the song - and the CPR instructor looks on helplessly - but it was the episode’s hilarity that made it so memorable. Matt seized upon it.
“I’m trying to do the ‘Stayin’ Alive’ thing in my head, and I’m stopping every once and a while to give her a couple breaths,” Matt said. “It really was just panic. I thought to myself, ‘Nothing will ever be the same if this doesn’t come out. If this doesn’t happen right, nothing will ever be the same.’”
Meanwhile, Nora explained the situation to emergency dispatchers on the phone and relayed instructions to her dad on how to properly execute compressions and breaths. Matt continued CPR until the paramedics arrived with a defibrillator.
“At that point, I had done three or four rounds organized rounds of the right kind of CPR,” Matt said, “and the first responders came in and took care of it.”
Vera cried out after two shocks. She began to breathe.
The Ubers were later told by Riley pediatric cardiologist Larry Markham that patients who enter cardiac arrest outside the hospital have “a less than 10% survival rate.” That number dwindles to 4% for those who survive with no neurological damage.
“It wasn’t my life flashing before my eyes, but it was our collective life, that I thought might no longer be,” Matt said. “I don’t understand how, having had a few minutes to think about how we might live without her, I have no idea how a parent or a family reckons with that.”
A visit to Riley
Vera was rushed from the Uber’s house in Carmel to Riley Children’s Hospital. From the front seat of the ambulance, Matt called his wife, Erin, who was returning from Bloomington with their oldest daughter, Emma.
Vera was delivered first to the emergency room, then to the cardiology unit, where a team began a series of tests to determine the cause of her cardiac arrest, including several EKGs.
Mark Ayers, a pediatric electrophysiologist at Riley, was introduced to the Uber family after Vera’s second EKG. Ayers and his team were perplexed by her case. Initially, arrhythmias in Vera’s EKG made Ayers and the other cardiologists think Vera was dealing with Long QT syndrome, a cardiac condition that impacts heart rate and rhythm.
“I was really concerned that she was so young,” Ayers said. “I recently told one of my colleagues that it was probably one of the most stressful weeks I’ve ever experienced, trying to figure out what the best treatment plan was for her, and that really does center around how young she is.”
After receiving genetic test results back, however, the team learned that what they were dealing with was different, and far less common.
Ayers and his team diagnosed her with calmodulinopathy, an arrhythmia syndrome that mimics Long QT. There are currently only around 100 other documented cases of calmodulinopathy worldwide.
Her diagnosis made two things clear: one, the efficacy of medication alone would not be enough to prevent a relapse. And two, Vera would need a defibrillator implanted immediately.
Her “power pack” was surgically placed by members of the cardiology team a few days later. Because she is so small, the device rests in her belly. It will likely be moved to her shoulder, where defibrillators are usually placed, as she grows.
“It’s a really hard decision when they’re so young - there are multiple different things to think about,” Ayers said. “You have to weigh all the risks and benefits to try to make the best decision for the family and for her, so it was really stressful trying to do what was best for her both in the short term and the long term.”
Moving forward
With so many of the details unclear, the Uber family and their team at Riley are moving cautiously as they explore the limitations caused by Vera’s condition. For now, they are keeping her away from “contact sports and highly strenuous activities,” Erin said. One thing the family has enthusiastically pushed forward, however, is their knowledge of emergency first aid.
The potential for a relapse galvanized the Ubers into action. Her family and several family friends - around 20 people, in all - became CPR- and defibrillator-certified shortly after Vera’s hospitalization, so they could surround her with people capable of resuscitating her if she were to experience a relapse.
“As we understand Vera’s medical condition, we also know that there is a probable chance she will have a follow-up cardiac arrest, Erin said. “So we have a mission for CPR and [defibrillator] training for everyone. You just don’t know when you’re going to need it. And, quite honestly, our baby might need it.”
The Ubers plan to advocate for increasing the number of defibrillators available to the public, especially first responders like the police. They also want to promote increased, comprehensive first aid training for the community.
Indiana is one of 40 states that includes CPR and defibrillator training as a requirement for high school graduation, but the requirement didn’t go into effect until 2014, meaning many adult Hoosiers didn’t learn the basics in school.
Mostly, the Ubers want to share Vera’s story, in hopes that others will learn from it.
“We believe in miracles,” Erin said, “and we’ve absolutely lived one.”
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