I met Reid when he was 8 years old. Previously seen by another cardiologist, Reid had a small hole in his heart. It had been there since birth, but would likely never be large enough to hurt him. The hole was very near one of his heart valves, though, so he required yearly checks to make sure the hole was not interfering with the function of the valve.
Like his visits to the cardiologist before, I was able to give the family good news: the hole was not a problem. Having a hole in your heart sounds terrifying, but Reid’s heart was fine.
Patients around Reid’s age begin to ask questions about their hearts with increasing frequency. So I asked him if he thought about his heart much.
“Not really,” he said, “except when I run. Which I don’t.”
“What happens when you run?” I asked.
“Well, I can feel the blood squirting out of my heart with each heart beat, so I try not to let that happen.”
I’m sure my patients spend significant time in my office confused, but this time, I was the one perplexed.
“How does the blood squirt out of your heart?”
“Through the hole,” Reid said, with a hint in his voice that maybe I wasn’t smart enough to be a doctor.
February is an obvious choice to host a week for Congenital Heart Disease (CHD) Awareness (Feb 7-14th). Many of us who work in the field of pediatric cardiology consider the entire month a time to promote awareness, but for families affected by CHD, awareness is never far from their minds.
Congenital heart disease is more common than most people realize. It affects just under 1 in 100 babies. To put it another way, if all 75,000 spectators attending the Super Bowl in Santa Clara this month suddenly had a baby at once (now THAT would be a halftime show), around 600 of those babies would be expected to have a congenital heart defect.
Some defects are mild, and many resolve on their own in the first few days, weeks or months of life. Others may require intervention, such as surgery or catheterization (small tubes inserted through the leg and maneuvered around the heart from the inside). The most severe heart conditions require repeated surgery and catheterization throughout life, and many still shorten lifespan by significant years.
The field of pediatric cardiology has undergone a transformative period in the last half-century. Advances in technology, skill and experience have resulted in tremendous progress in survival rates. While this is undoubtedly good news, and a credit to all those that have contributed to the wisdom that made this improvement possible, survivors are not magically cured.
Children and teenagers have had tubes inserted into their hearts, or skin and bone cut open to address defects—experiences with which very few of us can identify, even for those of us who have done those procedures to the children.
Medical illness is anxiety provoking for adults, and we may take for granted our ability to understand, rationalize, and employ defense mechanisms to make sense of our health.
Children often have not developed these skills yet—which must be quite a task for those born with a heart condition. And parents, who may have developed these skills for themselves, may not be as prepared to apply them to cope with the illness of their child.
However, the problem is not restricted to those who have had procedures. Reid has never had heart surgery. He likely will not have heart surgery while young, if at all.
But he refused to run because of his heart–more specifically, because of how he thought about his heart. This hole was not nearly large enough to limit his exercise, but Reid limited himself. The hole in Reid’s heart was on the inside, between two chambers, and there was no way for blood to escape, or “squirt out.”
No one ever explained this to the 8 year old, though. If there is a hole in a balloon, air leaks out. If there is a hole in a bucket, water leaks out. If there is a hole in the heart…blood must leak out.
As doctors, we should probably talk less and listen more. A 5-minute conversation, aided by a crayon-drawn heart picture by his artistically challenged cardiologist, cleared up years of misinterpretation and fear for Reid. And now he runs.
Pediatric cardiology has blossomed into a field of medicine that is no longer dominated by bad news with limited treatment options. But to fully mature as a field, we will need to expand our focus to the time between the visits. Kids don’t forget about the appointment after they leave. For some, the events of a 30-minute visit can linger, and we cannot take for granted what they take with them.
We just need to talk about it.
Click for information on the Heart Institute at Children’s Hospital Colorado.
Jeffrey Darst, MD is an Associate Professor of Pediatrics at the University of Colorado. He practices pediatric cardiology at Children’s Hospital Colorado. He is board-certified in both pediatric cardiology and general pediatrics.