November
25, 2005
No
Easy Fixes For the Heart
By E.
J. Dionne Jr.
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,
slightly embarrassed that he was asking a favor of a patient's
dad. He wasn't seeking anything for himself or his hospital. 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 to keep it in mind as they grow older.
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.
``Each year, there are 20,000 children who get their heart disease
corrected,'' said Martin, who is co-director of the Children's
National Heart Institute.
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, as Martin put it, they were simply ``fixed'' when they were
kids. Their physicians should know, too.
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. One of my
pet peeves is that journalists and politicians alike have more
compassion for those who struggle with problems they are familiar
with than with those whose problems they don't understand.
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.
©
2005, Washington Post Writers Group
