Matt and Erin Uber have never been so thankful for their large family, or their community of neighbors and friends who have become like family, as they have in the last year.
Some of them helped respond when the Carmel couple’s youngest daughter, Vera, suddenly collapsed from a cardiac arrest at age 4 on April 25, 2021, and all of them have stepped up to be prepared to potentially save her life if it happens again.
After the cardiac arrest, Vera, now 5 and back in preschool, was diagnosed with calmodulinopathy, a rare arrhythmia syndrome caused by a gene mutation, and chances are that her heart will someday stop beating again. She has a defibrillator implanted in her abdomen to provide immediate lifesaving measures, and – in case that doesn’t work – an army of people in her life refreshing their CPR and AED skills.
“If you think long enough on Vera, it will terrify you. Clinically, there is likely a future arrest. We’ve protected her the best that we’re able to. We’ve been compliant in every recommendation, yet still we could be living our lives just waiting for the next shoe to drop, and after that shoe drops, it could just keep dropping,” Erin said. “Having our vibrant extended family and community allows us the support, but also the distraction, of loving her with the people we love.”
Exactly one year after Vera’s cardiac arrest, approximately 50 people with ties to the Uber family gathered at Carmel United Methodist Church for a refresher course from Carmel Fire Dept. firefighter Brent Schnepp, who responded to Vera’s emergency. The Ubers plan to mark “Vera’s Heart Day” in a similar fashion every year, but they’re also partnering with the Carmel Fire Dept. with the hope that sharing their story on a larger scale will encourage others in the community to stay up to date on their CPR and AED skills.
“This is Step 1 in trying to do a little bit of extra training so we’re all a little more ready, a little more competent if something happens to your child or your friend’s child or a stranger walking down the street,” Matt Uber told those gathered at CUMC. “You can jump in and give somebody the gift of more time and love and life.”
‘The miracle’ For Vera, an outgoing and confident child who loves dogs and building with Legos, it was her father’s quick actions that gave her another chance at life.
The two had been playing tag in their kitchen after a busy day when Matt heard a thud and found Vera lifeless on the floor. Thinking she had likely smacked her head hard enough to pass out, he soon realized she wasn’t breathing. He yelled for his older daughter, Nora, to call 911 as he began doing CPR, which he remembered how to do because of a scene in an episode of “The Office” he had recently watched.
First responders soon arrived, bringing Vera back to consciousness upon a second shock from an AED. They rushed her to Riley Hospital for Children, where doctors told the family it appeared she did not suffer any permanent damage as a result of the cardiac arrest. That’s not often the case, as up to 90 percent of people whose heart stops die before reaching the hospital, and many of those who do survive experience brain or nervous system injuries, according to the Centers for Disease Control and Prevention.
“Getting her to Riley was the miracle,” Matt said. “Her blood still moving, the oxygen moving and her being revived on our kitchen floor is what made Riley’s next wonderful steps possible, and it was really unlikely that was going to happen.”
As Vera recovered, the Ubers soon realized that, because less than 80 cases of calmodulinopathy cases have been reported worldwide (and many of those discovered post-mortem), chances are slim that enough research will be done to find a cure or better treatment. So, they made the decision to implement the defibrillator – which will be relocated within her body as she grows – and do everything they can to ensure those in Vera’s circle and beyond know how to respond if her heart stops again.
Those efforts began the day Vera returned home from the hospital, as several neighbors gathered to learn CPR from Schnepp. Many of those same neighbors returned for the refresher course at CUMC.
Kyle Monk, who hosted the initial CPR training in her home and is required to know how to perform it because of her occupation, said she’s made sure her children know how to respond during a cardiac emergency.
“When we did (the training) at our house, my girls were there,” she said. “We tried to get all the kids involved, because they’re the ones out playing with (the Uber children).”
Vera’s three older sisters, who range from 11 to 20 years old, have also become proficient in CPR and AED usage and are passionate about encouraging others to learn how to save lives, too. Nora, a junior at Carmel High School, recently worked with CFD to create a video sharing her family’s story and information on how to perform CPR and use an AED. CHS played the video April 22 for its 5,300 students.
“It’s so simple. It takes maybe 10 minutes to refresh your (CPR and AED skills) and educate yourself on it,” Nora said. “It really does change the course of a lot of people’s lives.”
CFD plans to repeatedly share the 10-minute video featuring the Uber’s story on the big screen in Midtown Plaza during an event – likely in late May – that will also include an opportunity for community members to learn CPR and practice on dummies.
