Thursday, November 23, 2017

Raising awareness of congenital heart defects


February is heart month, set aside not just to remind adults to watch their blood pressure and get some exercise but also to draw attention to an often-forgotten group of heart patients: children.

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.

The family pediatrician suspected that his heart was making a murmur, but it wasn't considered serious. Six months later the murmur was still there.

That led to further testing, referral to a pediatric cardiologist and a diagnosis of tetralogy of Fallot, one of the most common and treatable, but complex, cardiac birth defects.

For reasons that aren't fully understood, it happens early in fetal development, usually before the mother knows she's pregnant.

Something goes wrong, causing malformation of the baby's heart and reducing the flow of oxygenated blood to the body. The defect can make babies seem overly sleepy and unusually irritable, and it can make their skin look blue.

“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)."

Some congenital heart defects cause no problems. Others can put the person at risk for lifelong, potentially serious heart problems. Some simply resolve on their own.

The week of Feb. 7-14 has been set aside nationally to increase awareness of CHDs.

Verigan's youngest son, 1-month-old Jesse Oliver, had a small hole between the ventricles of his heart, detected before birth.

"We were concerned, but on followup, the hole is gone," said Verigan, whose four children were checked for CHDs because of his history.

"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.

"They literally grow out of it within the first year or two of life," he said. "But other kids have a significant defect and need a lot of help early in life and beyond."

Some CHDs are detected during pregnancy; most others are found shortly after birth or within the first six months of life.

"But 10 to 20 percent of CHDs are found later in life," said Dr. Monesha Gupta, a pediatric cardiologist at Johns Hopkins All Children's Heart Institute, who published research on the prevalence of CHDs in children older than 1.

"They can be missed if their heart doesn't make a noise suggesting a heart murmur, or if the baby doesn't turn blue," she said.

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.

"The baby can't seem to stay awake long enough to eat, to finish nursing or to finish a bottle," Gupta said.

Older children and teens may complain of palpitations or a racing heartbeat, chest pain, dizziness and fainting. Or their physician may detect a previously unreported heart murmur.

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.

"It's rare, yes," Gupta said, "but we've all heard the stories of seemingly healthy young athletes suddenly dying in the middle of a game."

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.

At a specialty referral center like Johns Hopkins All Children's, Gupta and her colleagues see several new CHD patients each week.

It's the same at St. Joseph's in Tampa, Ringewald said. And while most CHDs can be successfully repaired, it may not be a cure. Other heart problems may still surface later.

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.

He said he focuses on taking care of his heart by eating right, watching his weight and not smoking or drinking alcohol. And, while he no longer has time for organized sports, "I keep pretty active running after my kids," he said.

Contact Irene Maher at [email protected]

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