WASHINGTON – At 4 months,Brendon Spear's right palm was frequently clenched. Going into his second year,a weak foot caused him to walk in circles.
Brendon's mother,Jessica,talked to his physicians. Her anxieties were met with reassurances that the awkward habits would disappear within two years.
It wasn't until Brendon was 19 months old and had been through five physicians,that he was diagnosed as having suffered a stroke in utero,leading to cerebral palsy.
“If I would've heard one time of a child having endured a stroke,I would have taken that information to a doctor saying,‘Listen to me,'” Jessica Spear,said. “The awareness is simply not there.”
Brendon,now 4,is one of thousands of children affected annually by pediatric stroke. Awareness of pediatric stroke,or lack thereof,was the topic of a briefing Tuesday on Capitol Hill.
Known primarily for affecting the elderly,stroke is the third leading cause of death among adults in the United States.
Less commonly known is that strokes also affect infants,children and young adults. Of every 4,000 live births,at least one stroke will occur,making it one of the top 10 causes of death in children in the United States,according to the American Heart Association.
“The absolute risk of stroke to a baby,starting a week before birth and for the next two-to-three weeks after birth would be at least the same of a 65- to 70-year-old,” said Dr. E. Steve Roach,director of pediatric neurology at the Nationwide Children's Hospital in Columbus, Ohio. “It's not some rare thing we're dealing with.”
Sixty to 80 percent of children who suffer a pediatric stroke will survive,but up to 80 percent will have permanent neurological deficits,most commonly cerebral palsy. They also face decades of taking medication,behavior interventions and special education. There is no data on the life expectancy of childhood stroke survivors.
One study found that the average cost of medical care in the first year is nearly $43,000.
Speedy diagnosis,treatment,rehabilitation and therapy can minimize their risk of death and disability.
But,as Spear experienced,early detection and diagnosis is not easy.
Roach said knowledge of pediatric stroke is common among neurologists,but less so among pediatricians,family doctors and parents.
“Even children who could theoretically be treated if they got to the emergency room quickly tend to show up hours after the onset of the problems,” he said.
Spear,who says she suspected a stroke early on,said awareness could have made a the difference.
To help raise awareness about pediatric stroke,Spear and her husband,Stephen,started a foundation,Brendon's Smile.
“Our organization targets more people that wouldn't otherwise know about the issue,” Spear said of the grassroots organization based in St. Louis. “Once people know about this,I'm sure more money and research will come.”
Roach agrees research is necessary,particularly on treatment and prevention,but said funding has not been easy to come by. Even then,scientists face challenges.
“Yes it's common,but it's not so common that it lends itself to easy,straightforward research,” he said. “We're usually left trying to adapt treatment based on studies done in adults. Sometimes this works well,sometimes it doesn't.”
The American Heart Association and Children's Hemiplegia and Stroke Association are working to increase funding for research,while also providing a support system to families of stroke victims. CHASA,based in Arlington,Texas,works with more than 2,000 families of pediatric stroke survivors,including the Spears.
Now pregnant with her second child,Spear quit her job as a police officer to focus full time on Brendon and her foundation. Brendon receives eight hours a week of therapy,takes swimming lessons and plays soccer.
“I'm a very passionate person when it comes to my son,” she said. “I would take his stroke back in a heartbeat,but I can't do that. So the knowledge I have acquired I have to share with other people. Anyone who will listen.”