VIRGINIA BEACH, Va. — Congenital heart disease is a problem with the heart that exists from the time someone is born. A small portion of the causes have to do with genetics, but scientists are still studying the variations of this defect that occurs in newborns.
The CDC says some types of defects, especially mild ones, are increasing.
Christine Tokarczyk from Virginia Beach says she's been trying to raise awareness about CHD ever since her son, Zach, was born.
Zach is one of five kids. He has two teenage older sisters who don't struggle with any cardiological issues.
Tokarczyk says she had a healthy pregnancy with Zach and no known heart disease in her family. So, when Zach was born at Chesapeake Regional Healthcare, doctors immediately rushed him out of the delivery room. Tokarczyk couldn't believe what went wrong.
"They came in and the nurses told me they didn't know exactly what it was," Tokarczyk said.
Zach was born with Transposition of the Great Arteries, which means Zach's major arteries in his heart were switched around and in the wrong place. That wasn't the only thing wrong with his heart.
"They called him 'Swiss cheese heart,'" Tokarczyk said. "Yes, it was a term that medical professional used after so many holes. It's a term that sticks in your head as a parent...eight holes."
At just four days old, doctors rushed Zach into open-heart surgery, where they were able to save him. But the long-term effects would still be there.
"When I'm running around outside with my friends, I get exhausted and come in to have a drink," Zach said as he sat next to his mom. "My new friend who lives down the street, he said 'You look like a normal ten-year-old, and I'm like 'I'm not...I have a broken heart.'"
10 years later, Tokarczyk says Zach still struggles with a compromised immune system and enlarged heart. Tokarczyk says best case scenario, the rest of his body grows and his heart remains the same size, so they eventually even out.
Zach always has to worry when playing with other kids about anyone throwing a ball at his chest during playtime or anyone running into him, because that could cause more damage to his enlarged heart.
"There's a lot of unknowns that we can't answer, and when you’re told that in the first two minutes, your world literally stops," said Tokarczyk.
Now, she is pushing for cities to adopt a new initiative in which people with Congenital Heart Disease put a sticker on their car and even have a card or a flag inside where the child sits, labeled with the name of the disease and information. That way, in the case of an emergency, first responders know exactly what someone with CHD needs.
"It says what his diagnosis was, as well as who his doctors were and which hospital, so they knew if something were to happen, then who to contact and who to speak with," Tokarczyk said.
She says right now it's just a proposal for cities to use as ways to keep children safe.
However, she hopes to one day get in touch with lawmakers to see if this initiative can be proposed as a bill and eventually turn into a law for Virginia and other states.
Tokarczyk says it's one way she's trying to create more awareness, and hopefully, mend more than one broken heart.
Zach does homeschool with his family. He says he enjoys math, and is looking into no-contact sports like swimming and bowling.
