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By Transamerica / Jun 22, 2016

Hole in Her Heart: “We Didn’t Want to Believe It”

Being born with a hole in your heart is not as uncommon as you might think. In fact, congenital heart defects affect about 1 in 100 newborns every year, making it the most common birth defect in America.

Scary stuff.

Kelly Dziubek Matacena and her father, Gary Dziubek, a former Transamerica employee, would know.

“I remember the day the doctor told my wife and me that Kelly had a hole in her heart. We didn’t want to believe it,” Gary recalled. “It was just so difficult to comprehend.”

No one is exactly sure why Kelly was born with ventricular septal defect (VSD), more commonly known as a hole in your heart. Nor was it diagnosed right away.

As an infant, Kelly wasn’t eating as well as she should have been, and she was having trouble keeping food down. When Kelly was 5 months old, however, she experienced congestive heart failure. At 9 months, she underwent her first open heart surgery and became what her father calls his “technology baby.” Kelly was and still is 100% dependent on a pacemaker.

“This was the hardest time in my life. Thinking back it still brings me to tears,” Gary said. “Kelly’s body initially rejected the pacemaker. I remember a priest coming to me and asking if we wanted to pursue last rights. I completely lost it.”

No amount of education could prepare the family for what happened next.

At 12 years old, the lead wire in Kelly’s pacemaker broke, and she experienced multiple seizures. She was rushed in for emergency surgery to repair her lifeline.

Her heart actually stopped 9 times that one evening.

“We always knew that any second she could be gone. I mean, she is kept alive by a computer,” Gary said. “But life is fleeting. We are all just one breath away from not being here.”

Fortunately, there are organizations like the American Heart Association that make a difference in people’s lives every day.

Now, at 28 years old, Kelly has made it part of her life to advocate for the KellyMatacena American Heart Association.

“The reality is that because of the resources, research, and development of the American Heart Association, kids like me get to grow up to be adults like me,” said Kelly. “I am so thankful.”

Knowing how fragile life is can definitely change the way you view – and live – your life.

Kelly’s family makes it a mission to give back – by raising awareness, from telling her story to participating in heart walks and speaking at fundraisers.

“If I can help one more person grow up and be who they want to be, what can be better than that?” Kelly said.

Her father, who recently retired at the age of 73 from Transamerica Life Insurance Company, has hosted a team for the heart walk for the last 15 years. He has personally raised over $10,000 for the American Heart Association.

The lessons run deep.

According to Kelly’s dad, Gary, he has made a conscious decision to change his life in a variety of ways.

“Knowing how quickly things can change, I try to make healthier food choices, have stayed active by running and being a soccer referee, and I stopped smoking a long time ago” Gary said. “In addition, I try to remain positive in everything that I do. Because of the research and development the AHA is able to fund, conditions like Kelly’s continue to be diagnosed and corrected. Oh, and there’s one more thing. Tell people you love them as much as possible.”

To find out how you can support the American Heart Association or to participate in a heart walk, please visit www.heart.org.

Transamerica is not affiliated with the American Heart Association.