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    Tuesday, July 16, 2002

    Thinking with the Heart: The NY Times has a scary article on sudden death in children. (Link requires registration.) Reading it leaves you cold and anxious if you have children. It’s a silent condition that no one screens for because the test is “too expensive.” As a result, children are dying from it all over the place. Or at least, that’s the impression the article gives. The last line is a quote from a woman whose son died of the disease while playing football: "Prevention, is 10 times better than hopeless resuscitation."

    The condition in question is idiopathic hypertrophic cardiomyopathy, a thickening of the muscles in the heart that can lead to obstruction of blood flow and sudden death. The problem is, those two outcomes aren’t preordained. Some people with the condition never have any problems at all. There’s no way to predict who will die and who will live. As this Mayo Clinic guide to treatment makes clear:

    Reports involving large numbers of patients from tertiary referral centers suggested that HCM [hypertrophic cardiomyopathy] was a malignant disease characterized by early sudden cardiac death. Subsequent population-based studies have shown that life expectancy is normal in HCM as a whole; however, there are clearly HCM families that harbor a malignant tendency for sudden death. The identification of individuals (and families) who are at higher risk for SCD [sudden cardiac death] is difficult. (emphasis mine)

    Current practice is to screen children for the condition if they have symptoms or have a family history of early unexpected cardiac death. It would be impossible to screen every child for the disorder. Doing so could even lead to more harm than good, since it could lead them down the road to treatment that they may not even need.

    We have an imperfect knowledge of many things in life. This is one of them. We just aren’t at the stage in our learning curve of this condition where it would be wise to test everyone for it. Someday we will be, perhaps when genetic testing makes it possible to identify those most at risk, but that day is not today.
     

    posted by Sydney on 7/16/2002 05:52:00 AM 0 comments

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