I can’t tell you how many times people have said to me, “Oh my God! You were only 11 years old when you had a stroke! How is that possible?”
I’ve come to expect such remarks from people who don’t know anything about stroke except what they’ve heard in the media, or who only know elderly people who’ve had a stroke. But it always surprises me when even people who were young adults at the time make the same kind of comments.
As any “young” stroke survivor should realize through personal experience, age doesn’t protect anyone from having a stroke. Even babies, less than 1 month old, can have a stroke. In fact, according to research by the (U.S.) National Institute of Neurological Disorders and Stroke (NINDS), stroke is one of the top ten reasons for death in children.
Although no one can really give accurate statistics on how common pediatric stroke is, current estimates are that it occurs in one per 4000 live births and in at least seven per 100,000 children a year. As well, unlike the case with adults, where the ratio of ischemic to hemorrhagic stroke is approximately 4:1, some studies suggest that in the pediatric population it is closer to 1:1.5. In other words, children are more likely to have a “bleeding” stroke than a stroke caused by a blood clot. On the other hand, as diagnostic procedures improve (e.g., MRI and PET - positron emission tomography), it is beginning to look as though ischemic strokes in children are more common than originally thought.
A wide variety of problems can cause pediatric stroke. One of the more significant reasons for pediatric stroke has to do with an increase in chronic conditions such as congenital heart disease. As pointed out by Dr. Gabrielle deVeber, a pediatric neurologist at the Toronto Hospital for Sick Children, children who once died of heart defects now live, but they are more prone to stroke. Other neurologists also point to blood disorders, vascular malformations and viral infections as common causes. Probably the most common cause of hemorrhagic stroke in children is a ruptured arteriovenous malformation (AVM), which is what happened to me when I was 11. Together with aneurysms and cavernous malformations, AVMs are responsible for up to 85% of hemorrhagic strokes in children. Other common causes of hemorrhagic stroke are blood disorders (including leukemia) and intracranial tumors.
None of this information, unfortunately, is widely known. Most disturbingly, much of it seems also to be news to general practitioners and emergency room physicians. In fact, just as I was initially misdiagnosed back in the 60s as having the flu (or possibly a drug overdose, so they pumped my stomach just in case!), it remains the case that children are quite likely to be misdiagnosed and not get immediate treatment. According to Dr. Donna Ferriero, chief neurologist at the University of California-San Francisco Department of Neurology, barriers prevent needed investigation into the cause and treatment of neonatal and childhood stroke. Most significantly, she points out, lack of awareness of neonatal and childhood stroke results in delayed and missed diagnosis, and approaches to investigation are not standardized.
Some neurologists say that prognosis for recovery is better for children than for adults, because a young brain can adapt more easily. Recent research shows, however, that up to 20% of affected children die, up to one third have a recurrent stroke, and more than half of all survivors are left with neurologic (e.g., one-sided weakness) and/or cognitive (e.g., aphasia) disabilities that are permanent. When you’re one of the more than half of children left with permanent disabilities, as I am, then it’s hard not to be skeptical of pronouncements about the greater capacity of the young brain to recover. In fact, there is precious little research on the long-term outcome of childhood stroke. What little research that exists tends to be based on extremely small sample sizes (e.g., one was just published based on 16 Swiss children, another was just published based on 29 American children).
I have no evidence, but it seems to me that one of the reasons so many of us are left with significant disabilities – despite our youth at the time – may be precisely because we were not diagnosed or treated immediately. In my own case, I was in and out of consciousness when my father took me to the hospital, and the emergency physician told him to keep slapping my face to keep me awake! When I didn’t get any better, the family doctor was called and he recommended that I be kept out of bed and walking around! I can only imagine the damage that was done as a result of all this advice – damage that could probably have been prevented if the wise doctors had realized what they were seeing right in front of their eyes.
Stroke, of course, is a traumatic event for anyone no matter what their age, but what needs to be talked about more is the psychological damage that is done. In this regard, I’ve noticed that researchers of childhood stroke are starting to look at how it affects survivors as they grow into adulthood, and what they’re finding is not good news. Most of us do return to finish school after a period of rehabilitation, and even go to college or university, and enter the workforce on a full-time basis. But in adulthood we tend to have poor communication skills (that’s me!), we’re not necessarily well-socialized (whatever that means!), and most of us, according to a recent Dutch study, have low self-esteem, emotional, behavioral, and health problems (no comment about me!).
I’m fascinated by these studies that have only just begun to appear in the literature, because they’re about me, and never before have I ever seen research that so directly applies to my own situation. For too many years, I thought I was the only child who had ever had this happen. Even after I realized how relatively common stroke is in children, I still felt the lack of attention to the long-term outcome was a way of saying that I really should have just GOTTEN OVER IT a long time ago. So, I find it affirming to read these studies. I hope there will be many more conducted in the years to come, and I hope that awareness of pediatric stroke will become widespread.
Blom I, De Schryver EL, Kappelle LJ, Rinkel GJE, Jennekens-Schinkel A, Peters AC. (2003) Prognosis of haemorrhagic stroke in childhood: a long-term follow-up study. In the journal Developmental Medicine & Child Neurology 45 (April): 233–239.
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