Family wants to build awareness of childhood stroke
To Reichen Sosinski's four-month check up his parents brought a list of concerns to their pediatrician. Amongst their questions, they had noted that Reichen seemed to prefer his left side.
While not too concerned, their pediatrician offered the Sosinski's a referral to a neurologist at Gillette Children's hospital just to make sure. Initially his mother, Kiera didn't take it but after discussing it with her husband, Drew, she decided it would be a good idea.
At their initial visit, Drew and Kiera Sosinski were told that Reichen had brain trauma and that it could have been from a stroke. More tests were needed to know exactly what was going on and the family was told they would have to wait.
"Waiting was the worst part... they tell you that your child has brain trauma and then say come back in two weeks and we'll tell you what that means," Kiera said.
An MRI revealed that Reichen had suffered a stroke sometime while in the womb. The neurologist told the couple their Reichen would never be "normal".
Looking back, Kiera said they did have one clue while pregnant. During her 23 week ultrasound the technician noticed that Reichen had his right hand fisted. The couple went in for a second ultrasound and were told everything was fine. Kiera said she thinks the stroke probably happened before the ultrasounds.
After receiving the diagnosis Kiera read everything she could get her hands on about strokes and cerebral palsy. Childhood strokes fall under the umbrella of cerebral palsy. While some of the information helped, Kiera said she got so caught up in the what ifs that she ended up scaring her self more than necessary. She then decided to be selective about what she read.
On her blog, Kiera says she was so determined to fix the problem that she exhausted herself looking for answers. Eventually though she figured out that treatment would be a marathon and she was running a sprint.
"It's easier now that we've charted a course," said Kiera about Reichen's treatment.
Kiera's also very blunt about the affects it had on their marriage. Kiera said she and Drew handle things differently. She's extroverted and finds perspective in hearing other people's thoughts, while he wanted to keep it private. The first couple weeks after the they learned of the stroke, Kiera said they fought over how to handle the situation. Eventually they have come together as a team, though.
"In the end, needing to be a team brought us closer together and has bonded us together in ways I never could have imagined," Kiera wrote on her blog.
According to the Children's Hemiplegia and Stroke Association one in 4,000 kids are affected by strokes. There are a number of reasons infants and children have stokes including cardiac disorders, hematological disorders and infection.
In Reichen's case, Drew said it seems to have been just a fluke. Fortunately Reichen's stroke seems to have been mild.
"Luckily we caught it while he was very young and we were able to start therapy sessions when he was an infant," said Kiera.
Now two-years-old Reichen resembles every other kid his age. He loves to play with noisy toys, run in the backyard with the neighbor kids, watch cartoons and eat fruit snacks.
From a cognitive stand point Reichen is on par with others his age, Kiera said. However physically Reichen suffers some affects from the stroke. He still prefers to use his left side and when he gets tired he limps when he walks.
To retrain his brain and gain mobility Reichen goes to occupational, physical and speech therapists. He has a boot to help his right leg. The family lovingly refer to the boot as Reichen's "rockets" because it's decorated with little space ships.
To force him to use his right side Kiera and Drew also had a cast put on Reichen's left hand for nearly a month. Although somewhat controversial Drew said they are happy with the results.
"It trained his brain to use the other arm," said Drew.
Kiera and Drew continue to work with Reichen at home as well. For example when Drew feeds fruit snacks to Reichen, they play a game where he has to reach for the sweet little treats with his right hand.
Despite all they have been through, the Sosinski's feel fortunate. They know the stroke and its aftermath could have been worse.
"You don't feel lucky when you get the diagnosis but you feel lucky when out find out how bad some kids have it," said Drew.
The experience has been an education, Drew said. Over the last couple years they have come to speak in a different language that involves words like hemiparesis, brain plasticity and hematological disorders.
Since going through this Kiera has reached out to other families through her blog http://ikehappens.blogspot.com/search/label/StrokeAwareness.
The family also wants to build awareness of the existence of childhood strokes and to alert people that early hand preference is not normal for infants. Reporting hand preference to a doctor and insisting on referral to a specialist can result in early detection and treatment while the brain is still in early development.