Commentary: Youth with disease must keep eye on their futures
WASHINGTON -- A decade ago, just after Thanksgiving, my son James was diagnosed with Kawasaki syndrome, an unusual immune disorder that affects the heart and the heart arteries. My wife and I had never heard of this strange disease, and we were scared.
We took James to the Children's National Medical Center in Washington where we encountered Dr. Gerard Martin, a lanky pediatric heart specialist who combines a matter-of-fact honesty with a playful attitude toward kids. It didn't surprise me to learn that he and his wife have five of them.
Martin is a stickler for making sure that parents understand what's going on and he regularly sat my wife and me down as he pulled out pieces of paper on which he'd sketch out the heart and its arteries. I was, at best, an indifferent science student, but Martin managed to get his explanations through even my thick skull.
James got the standard treatment for Kawasaki's, a course of gamma globulin, but that didn't prevent him from developing an aneurysm in one of his coronary arteries. He was put on a half an aspirin a day and for two years, we made regular visits to Martin, hoping the aneurysm would go away. Just after James turned 5, right before Christmas, we got the best holiday gift ever: the aneurysm had disappeared. James was tested again at 10, and his heart was doing fine. Indeed, because he got his athletic talent from his mother, my son is very good at sports and in excellent shape.
Two days before Thanksgiving, James turned 13. He remains healthy and, thanks to Martin and his colleagues, he knows he'll have to keep an eye on his heart for the rest of his life.
But not everyone who had a heart problem at birth or in childhood is aware of this, and that worries Martin. That's why he approached me recently. He said that the news media could do enormous good by putting out the word that anyone who had a heart difficulty early in life needs remember as they age.
Because of advances in medicine, Martin said, many who would have died at birth or in childhood now survive into adulthood. The survival rate from congenital heart disease, minimal in the 1940s, is now 85 percent.
That's good news. The not-so-good news is that most of the survivors don't realize they need continued attention, and that their own doctors are usually unaware of their earlier problems. According to the Adult Congenital Heart Association, as many as 1 million adults who were treated for heart defects as children are at risk of serious illness as they move into middle age.
Martin estimates that "90 percent of these individuals are not receiving care" and notes that because the advances in medicine have been so rapid, "we haven't trained the generation of doctors" who could offer such patients the help they need.
This is a problem with straightforward solutions. The first is the easiest: People with these problems should be aware they have them and not assume that they were simply "fixed."
A committee at the National Institutes of Health has also called for the creation of a national pediatric heart registry so the medical profession can gather data on the survivors of congenital heart disease and learn how to treat them.
I'm uneasy talking about something so close to home, even though my son authorized me to write this because it might help other people.
But in this case, I figured that while my son -- thanks to an excellent doctor -- is aware that he'll need to have his heart checked regularly, there are many others who didn't get the care he did. And they should know this, too.
Oh, yes, and may this season be blessed for Dr. Martin, his colleagues, and all the kids under their care. The one thing worse than being in the hospital during the holidays is not getting care at all. Many of us have reason to be grateful.
E.J. Dionne's e-mail address is email@example.com.