In childhood, when the time horizon seems to stretch endlessly into the future, few worry about diseases usually associated with old age such as diabetes, clogged arteries, and stroke. But stunningly, these conditions increasingly afflict the very young — including not only children, but also babies. In fact, strokes in utero can occur, even before birth. Now, a new study shows that children have strokes far more frequently than previously thought, with the youngest children the most frequent victims.
According to Stroke: Journal of the American Heart Association, pediatric strokes occur two to four times more frequently than previously thought. Dr. Nidhi Agrawal, who headed a research team out of the University of California, San Francisco, says that hospitals have been underreporting the incidence of strokes among children in part because record-keeping systems lack the proper diagnostic codes. Since childhood stroke was thought to be so rare — afflicting only about 2.4 out of every 100,000 children — insurance and hospital charts have no corresponding category to check off on the intake forms. With that in mind, the researchers carefully combed through 2.3 million children’s records in the Kaiser Permanente database, looking for symptoms corresponding to stroke. After analyzing the radiology records, they found many cases of stroke that had been classified otherwise.
In fact, several earlier studies found even higher pediatric stroke rates of up to 7.9 per 100,000, including strokes occurring before or immediately after birth. According to the website Kids_Have_Strokes.org, one out of every 4000 infants will suffer from a stroke before reaching age one, and strokes strike six out of every 100,000 children from age one to 18. Those kids who do suffer strokes often end up with lifelong disabilities. Five to 10 percent of childhood stroke victims die from the event, and over half will have serious long-term physiological and neurological difficulties.
While scientists have conducted substantial research on how to treat and rehabilitate adult victims of stroke, there’s been very little progress in developing treatment approaches to benefit young stroke sufferers over the past decades or in understanding what triggers stroke in children. This probably is because the problem has been considered more uncommon than it actually is, and so, it’s received very little attention and very little research funding. It’s also led to misdiagnosis on a large scale. As study co-author Dr. Heather Fullerton says, “These data have unfortunate implications on pediatric stroke research, which has depended largely on retrospective observational studies. The findings “support recent calls for the field to move toward prospective multicenter studies of pediatric stroke.”
Dr. Ian Butler, MD, of the University of Texas Medical School, also hopes this new data will draw attention and research dollars to the issue. He says, “The number of times someone has said to me, ‘We didn’t think it was a stroke because it was a child,’ is legend. All of the residents here have it hammered into them to include stroke.”
Certainly, it’s disturbing in a larger sense that physicians and hospitals have been missing the medical reality simply because they don’t have an appropriate check-box on their intake forms, and because they don’t expect to see the presenting condition. Here’s another example of how the medical model, as often practiced, focuses so myopically on symptoms and diagnoses that it fails to consider possibilities outside the box, or to notice what the patient actually is experiencing beyond the presenting symptoms. In the case of pediatric stroke, it seems that medical professionals have allowed diagnostic codes to trump thoughtful observation and even careful review of the radiology report, and that approach has been completely misguided.
Which brings up the “what else?” question: What else do hospitals miss? What other conditions frequently get the wrong diagnosis slapped on them because no appropriate check box exists on the presenting form? You can bet where there’s frequent misdiagnosis, there’s also corresponding mistreatment. And all that wrong treatment adds up to the fact that medical errors — wrong prescriptions, wrong therapies, surgeries on wrong body parts on so on — kill up to 98,000 Americans each year.
At least in the case of pediatric stroke, the misdiagnosis issue has come to light, and where there’s light, there’s hope — as long as physicians read about this study when it shows up in their inbox, and as long as research organizations respond by committing some funds to study treatment alternatives. Then again, the example of hormone replacement therapy is enough to quash any such hope. Even though the evidence of its ability to induce cancer is now pretty much incontrovertible, its use as a therapy has only dropped by half. That means that half the doctors out there have either not read those studies or have decided to ignore them.
In the end, perhaps the best advice I can offer is that you should treat all exchanges you have with a doctor or hospital as business transactions — or as the saying goes, “Caveat emptor.”