Raising awareness of congenital heart defects anxiety chest pain

From newborns to college students, children can be diagnosed with heart abnormalities that happened before birth. These defects, known as congenital heart defects or CHDs, can be life-threatening, medically complex and require lifelong treatment. And later in life, they can put a patient’s own children at risk for the same conditions.

Adam Verigan was 6 months old when he started seeing a cardiologist. Doctors discovered he was born with a hole between the lower chambers of his heart, a defect usually detected during pregnancy and repaired not long after birth. But 35 years ago, when Verigan was born, prenatal testing wasn’t as sophisticated.

“My mom told me that the cardiologist knew exactly what it was as soon as he saw me in his office. I had bluish lips and fingernail beds, said Verigan, who is 35 and lives with his family in Clearwater.

I had open heart surgery to repair the defect at 10 months old at All Children’s (Hospital).

A small percentage of children are born with a minor defect such as a small hole in the heart that occasionally resolves on its own, said Dr. Jeremy Ringewald a pediatric cardiologist and medical director of the pediatric and adult congenital cardiac catheterization lab at St. Joseph’s Children’s Hospital in Tampa.

Parents, grandparents and other caregivers can be on the lookout for symptoms in young children that may suggest heart trouble, including blue skin, shortness of breath with activity, excessive sweating with activity, unexplained weight loss or a failure to gain weight, and fatigue.

Gupta evaluated 143 children over the age of 1 for the study and found five with a previously undiagnosed CHD, including some who required treatment. She and her colleagues called on physicians to be more vigilant in looking for silent CHDs — those that don’t produce a murmur — and about using echocardiograms to evaluate children for cardiac malformations.

Sometimes these defects aren’t picked up until a child gets into sports and athletic programs at school, Gupta said. But screening the general population is a controversial recommendation because such a small number of defects are likely to be found.

According to the American Heart Association, about eight in 1,000 babies in the United States are born with a congenital heart defect. The National Heart Lung and Blood Institute estimates that more than 1 million adults are living with CHDs.

Verigan lost count of the number of heart-related tests, procedures and surgeries he has had over the years. More recently he had a heart valve replaced, followed by an operation to implant a defibrillator in his chest that can detect and stop a dangerous heart rhythm.

Still, he thinks he’s proof that most CHD patients can lead relatively normal lives. He is often called on to speak with the families of newly diagnosed patients. He shares his story to give them hope, telling them he participated in sports at school, graduated from the University of Florida and went to graduate school at the University of South Florida.

He landed a dream job as medical imaging systems coordinator at Johns Hopkins All Children’s Hospital, where he has had all his cardiac care since birth. He has also been married nine years to his wife, Elizabeth, and their children are healthy.