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This is Congenital Heart Defect Awareness Week, a time set aside to raise awareness and funds to fight these heart conditions. KSMU's Michele Skalicky has more.

36,000 infants are born each year with a congenital heart defect…in fact it’s the leading cause of death from birth defects.
This is congenital heart defect awareness week…an effort to raise awareness of these heart conditions.
Dr. Armin Wagman is medical director at Pediatrix Cardiology of Springfield, PC…
 

"The incidence of congenital heart defects is about .9% or in other words, just under one in one hundred babies is born with a congenital heart defect."

Congenital heart defects are problems with the structure of the heart, which are present at birth. They’re the most common type of birth defect.
According to Dr. Wagman, most are treatable. Many don’t require treatment…they just need to be monitored. But the most serious heart defects require surgery…some of those soon after birth.
There are dozens of different types of congenital heart defects. The most common, according to Wagman, is VSD, a small hole in the wall that separates the pumping chambers of the heart…
 

"Some of the more serious ones are where one of the pumping chambers is virtually unformed. This can be a hypoplastic left heart if it's on the left side or hypoplastic right heart."

That’s the condition Luke Schawo was born with…basically, he has half a heart.
His parents found out he had it during a routine ultrasound at 22 weeks. Mom Megan Schawo says it was difficult news to get…
 

"At first we were just shocked. My husband and I knew nothing about congenital heart defects, and so we didn't know what the future for held. We didn't know if he would live or die. It was about three days in between the time we had our ultrasound and the time we could see a pediatric cardiologist for further diagnosis, and I think those were the longest three days of my life. We were very scared and not sure what was going to happen."

Once Luke was born, he was transferred to Cardinal-Glennon Hospital in St. Louis where he had his first surgery when he was 13 days old…
 

"That was a rough one. He had trouble that night. His heart stopped a few hours after surgery, but they obviously got it going again, but we almost lost him that night."

When Luke was 5 ½ months, he had his second open-heart surgery. Today, the adorable blonde-haired boy looks every bit the picture of health. He’s now 2 ½ and has one more surgery left—probably this summer. After that, he’s expected to live a normal life except for having to avoid contact sports.
He and his parents are advocates for the American Heart Assocation, which raises funds for research and education about heart disease…
 

"We see treatments that are in place today that weren't available five years ago, and we expect five years from now there will be many more advances as a result of the generosity of the American people."

Stephen Hall is spokesman for the American Heart Association. He says they also collaborate with other organizations like Mended Hearts and Mended Little Hearts to provide support for families…
 

"That collaboration focuses on a support network, helping families find answers, healing and hope. They basically pair people together, share their stories and provide them with resources that help them map out a plan and move forward."

Dr. Armin Wagman says we’ve come a long way in the treatment of congenital heart defects. He says virtually every diagnosis has the option of some type of surgery. But he says it’s important to continue to fund research into congenital heart defects…
 

"We really don't have a clear understanding exactly how these things form. We have some types of defects we've been able to understand, but there's still a lot of issues about these problems that we don't understand."

For more information about heart defects or the American Heart Association, call 881-1128 or go to americanheart.org.

 

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