VIRGINIA BEACH, Va. (WAVY) — To anyone who meets him, Zach Tokarczyk looks like a normal, 7-year-old boy.
But when he was just four days old, he faced a near-death experience — and he has the scar under his shirt to prove it.
Now, his mother, Christine Tokarczyk, wants to spread awareness about congenital heart disease in hopes that other moms can be more informed than she was.
“I didn’t expect two hours after his birth to be thrown into this unexpectedly — to have my four-day-old go under open heart surgery,” said Christine.
She says his skin tone never developed after he was born, and days later was diagnosed with transposition of the great arteries, a congenital heart defect (CHD).
CHD is a problem with the structure of the heart that’s present at birth.
“That was the first time we’d ever heard of it. That was the first time we knew anything of heart defects,” Tokarczyk stated.
Zach will have to be monitored the rest of his life, and can’t participate in contact sports.
“You still have no clue what each day will bring for him, what each day will bring for the years to come, you just don’t know,” she explained.
Tokarczyk doesn’t want another parent to go through she did, and has dedicated time to try and educate other families.
But she’s not alone; also trying to bring awareness is Alexander Ellis is a Pediatric and Adult Congenital Cardiologist at Children’s Hospital the King’s Daughters.
Ellis works with everyone from newborns to adults living with congenital heart defects.
“In Hampton Roads we have more than 100 babies born every day so we have at least 1 child with a form of congenital heart disease born in this area every day,” Ellis said.
He says the symptoms can be easy to miss if you don’t know what you’re looking for.
“There are a variety of symptoms and it depends on the diagnoses, but color change is easiest for a mom at home to notice so infants that are dusty colored or blue that’s certainly a concern, breathing patterns that are outside the normal where they breathe very fast throughout the day but especially when they’re eating,” Ellis said.
Ellis was on the state committee that was able to implement a way to diagnose newborns early on at Children’s Hospital of the King’s Daughters and now it’s being rolled out to the rest of the country.
“We’re checking a pulse oximetry on an arm and a leg before every baby goes home looking to see if there’s not a big difference between the extremities,” Ellis said.
Ellis says the earlier they diagnose the disease, the more parental education they can provide.
But while there are medical victories, Dr. Jay Gangemi, whose team performs the surgery also has to face heartbreaking losses. He says very infrequently do they tell families, the baby is not operable.
“You want to be able to cure and help every baby, you do, and we understand the national mortality rate is about 2.6 percent for congenital heart surgery, but not every baby is going to survive and we try to minimize that to as low a number as possible,” Gangemi stated.