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Inside The World Of Pediatric Cardiac Disease

Tribune photo by CLIFF McBRIDE

Kalani Huggins 7, had heart surgery at 11 days old. She holds a photo of herself from when she was in the hospital as a infant.

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By MARY SHEDDEN

mshedden@tampatrib.com

Published: February 12, 2009

Cameron Townsend and Kaelyn Graham are heart disease experts, but they don't worry much about how smoking, high cholesterol and obesity wreak havoc on the body's most essential organ.

Instead, they take the battle against heart disease personally.

"When I have the slightest pain, my friends ask if I'm having a heart attack," says Cameron, a 13-year-old Plant City resident who had his fourth open-heart surgery just three months ago. That's what people are familiar with, he says.

The teenager has to explain to friends that he was born with a congenital heart defect, a condition affecting nearly 36,000 newborns a year, according to the American Heart Association. That equals nine babies out of every 1,000 births.

Both Cameron and Kaelyn, 3, come from families that expected a healthy newborn but had to deal with open-heart surgery in the first days of life.

"We were taught to count 10 fingers and 10 toes" to know a baby was healthy, says Kaelyn's mom, Jolanda Graham. Instead, the Lithia girl has endured 15 surgeries, takes six medications and could someday require a heart transplant.

Most people know how heart disease affects adults who indulge in risky behaviors such as eating poorly and not exercising, but few comprehend the devastating impact of heart defects on children. That, in part, is why the cities of St. Petersburg and Tampa decided to recognize Feb. 7 to 14 as Congenital Heart Defect Awareness Week.

"When people hear about heart disease, they hear about adults who are smoking, but they don't think about children," says Jeff Jacobs, a pediatric heart surgeon at All Children's Hospital in St. Petersburg and St. Joseph's Children's Hospital in Tampa.

Congenital heart disease is the most common form of birth defect. And although some children live and grow without serious complications, the National Vital Statistics System in 2004 attributed 30 percent of all infant birth defect deaths to heart abnormalities.

All Children's and St. Joseph's Children's perform thousands of pediatric cardiac surgeries and procedures a year on children with serious and complex heart defects.

Pediatric cardiac intensive care areas are similar to adult cardiac care units. But all of the equipment - from beds and breathing tubes to machines that help pump a failing heart - must be small enough and sensitive enough to treat a child of any age or size, including a tiny newborn whose heart is the size of a golf ball.

"The equipment probably weighs 100 times what they do," says Lorri Hunt, nurse manager of St. Joseph's Children's Pediatric Critical Care Services.

Jacobs says the primary difference between pediatric and adult cardiac surgery is dimension.

Adults, who mainly require bypass and valve repairs, need work done to the heart exterior. Congenital defects, however, require surgeons to operate on the whole heart so they can patch holes or reconfigure defective valves.

It's only as a last resort that doctors suggest a heart transplant for a child. Jacobs conducts 10 to 12 a year.

All Children's is one of three Florida hospitals that conduct pediatric heart transplants. Doctors there have performed 109 since 1995, hospital spokeswoman Ann Miller says. Five children at All Children's are waiting for a heart transplant.

Jacobs says the Society of Thoracic Surgeons estimates that 96 percent of children who undergo heart surgery get to go home. But there's still 4 percent who don't survive.

"Your job as a doctor is to help the family and make the most horrible of situations a little less horrible," he says.

The growing need for care for adults treated for congenital heart defects as children is putting a new demand on hospitals, says Susan Collins, director of All Children's cardiovascular intensive care department.

Survival rates have improved, and these patients, now grown, need to fight off the high risk of those well-known acquired heart diseases. Who better to treat these young adults than the specialists who have literally treated them since they were babies, Collins says.

"Their hearts are more familiar to us."

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