Our March 2009 Stroke Hero's story shares a disturbing similarity with so many other Childhood Stroke SURVIVORs; the inability by medical professionals to recognize and diagnose a stroke event at an early age. 

Please meet this month’s Stroke HERO ... 5 year old Ethan.

Kristin, Ethan’s mother, described him as the sweetest, best natured baby there ever was. In most ways he was typical; he slept, ate and hardly ever cried.  Ethan was the third child and his parents were so happy to have such an easy baby.  But by the time Ethan was three months old there were a few things that didn’t seem quite right.  When he was in his high chair or bouncy seat he always leaned over to the left; he always reached for everything with his right hand.  Ethan could not roll over and when his parents tried to get him dressed or bathe him they were unable to straighten his left arm. 

Concerned by what she saw, Kristin brought these issues to Ethan’s pediatrician’s attention.  The pediatrician informed Kristin at Ethan’s three month checkup that it was just a little developmental delay and not to worry.  Ethan would most likely be all caught up by his six month visit.  This lack of recognition and diagnosis is a disturbing trend that seems to repeat itself with so many of the Childhood Stroke SURVIVORS.

However, like any parent  that was exactly what Ethan’s parents wanted to hear.  What mother wants to believe that there is something wrong with her perfect baby?  But there was something wrong and they knew it.

On Memorial Day, 2004 Ethan and his family were enjoying the end of a perfect weekend in a little lakeside town in Michigan by taking a shopping trip.  Without warning Ethan suffered a massive seizure.  He was taken by ambulance to a community hospital where an emergency room doctor casually informed the family “the CT scan was helpful.  Your son had a stroke”.  That night Ethan was transferred to a children’s hospital in Grand Rapids for a complete evaluation.  On June 1 2004, after an entire day of IVs, blood work, EEGs, and more seizures a very kind neurologist told Kristin and John, with tears in her eyes, that Ethan had not only suffered a stroke but that he was experiencing a type of seizure called infantile spasms.  The neurologist told them that every seizure inflicted brain damage.  If the seizures could not be stopped Ethan would be severely disabled; the only thing he would be capable of on his own would be breathing.  John and Kristin were told that in 98% of cases they are unable to stop the seizures.  Ethan’s chance of a recovery was very small.  It took four days before Ethan was transferred to a hospital in his home town of Chicago. It was another week before Ethan could be brought back home.  It required six more weeks of medical intervention before yet another neurologist informed Ethan’s parents that the spasms were gone. 

Ethan was in that small group of kids who would recover…and recover he did.
 
Today Ethan is a happy, smart and energetic five year old boy who is getting ready to play soccer this spring and start kindergarten in the fall.  He can run, jump, climb; he never stops talking and this year he learned how to write his name. 

Getting here hasn’t bee n easy for Ethan.  He has endured five years of medications, physical therapy, occupational therapy, stretching, speech therapy, feeding & swallowing therapy, hydrotherapy, hippotherapy, braces, splints, botox and casting.  He works so hard to do the things most other kids can do so easily and he never complains about it.  Ethan just does it. 

Ethan is always finding ways to adapt to his environment, to do things his parent’s aren’t always confident he’ll be able to do.  Ethan has taught his parents everything there is to know about perseverance and patience.  He has shown them the miracles that are in the everyday things they previously walked right by.  His parents feel so blessed to have Ethan in their lives.

While John and Kristin know Ethan faces future challenges in his life, they also know he is exactly who he is supposed to be.  Ethan will overcome those challenges. 

Ethan demonstrates strength and resilience; more importantly he represents the miracle that are our SURVIVORS are.