Day For Hearts: Congenital Heart Defect Awareness Week Concludes Today

Three-year-old Kayden Chorowiec-Meyer is making beefy engine sounds to accompany the movement of the toy cars he’s playing with on the carpeted floor of a doctor’s office, oblivious that all the adults in the room are talking about him.

The energetic little blond boy wrestles with his older brother and plays like any other kid. Times like this, his mother Carrie Chorowiec says, his difficulties are easy to forget.

But Kayden, born with a host of physical abnormalities, has had more open-heart surgeries than he has had birthdays - four, to be exact, in his short lifetime. There are likely more to come, and maintaining his health between them is a day-to-day struggle, Chorowiec says.

His condition has a name with far too many letters. It is as difficult to pronounce as it is to understand. What it means in practical terms, however, is that Kayden has a difficult road ahead of him that includes more surgeries, hospitalizations, tests and procedures than most adults would ever see in a lifetime.

“Hopefully at one point we can all breathe and have some relief that he’ll be okay,’’ said Chorowiec, of Howell.

That’s the hope of thousands of families throughout the country affected by congenital heart disease, says Mona Barmash, president of the Margate City-based Children’s Heart Information Network.

The organization sponsors Congenital Heart Defect Awareness Week, a national campaign to raise awareness about heart defects in newborns. The weeklong campaign concludes today, Valentine’s Day.

CHD Awareness week began in 1999, growing from a parent’s suggestion to an online support group for parents of infants with serious heart conditions, Barmash said. Today, more than 100 hospitals and groups worldwide participate in the campaign. 

Congenital heart disease affects one in approximately every 100 births in the U.S., affecting about 40,000 babies each year. It is considered the most common birth defect worldwide, and is the leading cause of birth defect-related deaths, Barmash said.

In addition to promoting the weeklong campaign, Barmash’s organization also is pushing for routine screening of newborns through a non-invasive procedure called pulse oximetry. The procedure measures the percentage oxygen in the blood, often a good measure of heart function, she said.

The procedure is routinely used with great success in this country at Children’s National Medical Center in Washington D.C. and in the United Arab Emirates, Barmash said.

Early detection crucial

Dr. Loyda Rivera, a Wall Township-based pediatric cardiologist who oversees Kayden, said early detection of congenital heart defects is key to newborns’ survival. Rivera diagnosed Kayden even before he was born, a practice she said is becoming more common.

Rivera, one of only about 1,200 cardiologists nationwide who specialize in infants and children, said she has been conducting in vetro cardiac screenings increasingly since 1991.

“And that has increased the chance to diagnose severe heart disease before the children are born and then plan for their birth,’’ Rivera said. “In that way, nobody’s shocked.”

That would have helped 10-year-old Deklan Chorowiec, Kayden’s older brother, whose heart condition went undetected until a day before his birth, his mother said.

“I had no idea,’’ Chorowiec said. “It was scary.’’

Deklan, a quiet and polite fourth grader, has nearly the identical heart condition as his younger sibling. He has had three heart surgeries to correct his heart’s function and is considered repaired, though he’s under Rivera’s close scrutiny.

But even with the best detection, there is the grim reality that not all children can survive. Some defects are just too severe, Rivera said.

“That’s just the reality of what we do,’’ Rivera said. “There are some cases that I try to give the parents, you know, faith that if they just live day by day with what you have and we will see if at the end of the tunnel there may be a light.”

An uneasy peace

For the Chorowiec family, the effects of seven open-heart surgeries, various hospitalizations, and a seemingly unending stream of doctor’s appointments have sometimes been overwhelming.

“The terrors of whether he (Deklan) was going to be breathing in the morning and the constant doctor’s appointments,’’ Chorowiec said. “It was just a nightmare.’’

But now, after three surgeries, Chorowiec said she is able to look ahead for Deklan, to make the plans for his future -- plans that parents of healthy children take for granted.

Kayden, on the other hand, is a different story.

“Kayden is a daily question mark,’’ she said. “It’s a daily struggle.’’

Chorowiec carries that reality with her and she said she hopes and prays each day that her youngest son will have a long, reasonably healthy life. But she does not let herself dwell on what may, or may not, happen in Kayden’s future.

“What gets me through is just looking at them and forgetting – just living a normal life and playing with them,’’ Chorowiec said. “It’s only those times when you have to go to the hospital that you remember it. It’s easy to forget, especially with them. They’re such good kids.’’