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When Your Kid Has a Stroke: Parents Share Their Stories
By Rowena Alegria
Everywhere she goes, Jessica Spear wears a T-shirt that says “Raising Awareness For Childhood Stroke.” The St. Louis, Missouri, mom has one in every color, although her childhood stroke tattoo gets more attention. She hopes a message soon to be stamped on her car will attract even more eyes. And Inquiries.
“If we can reach everybody, they won’t have to go through what I’ve had to go through,” Spear says. But reaching “everybody” is a monumental task since a lack of knowledge and support for pediatric stroke exists around the world.
“There is a striking lack of public and medical awareness of stroke in children,” Dr. Finbar O’Callaghan of the University of Bristol in England told BBC News this summer.
He spoke on behalf of researchers at the university who published a study of childhood stroke that showed up to five children in Britain have a stroke everyday.
In the United States, stroke occurs in about six out of every 100,000 children, according to the Children’s Hemiplegia and Stroke Association. The rate is even higher for infants: around one in 4,000.
It is unclear how many strokes occur prior to birth. And that’s part of the problem. Not enough is known about childhood stroke in general: how many there are, what causes them or how to treat them, let alone how to support families dealing with the effects.
Although Spear says she knew something was wrong with son Brendon within two weeks of his birth, figuring out he’d had a stroke before he was even born took a year and a half. That time was filled with professionals dismissing Spear’s concerns about her child. Brendon, who is now two, didn’t turn to the right or use his right hand because he would surely be left-handed, she was told. And all kids fall when they’re learning to walk because they can’t pick up their right foot.
“Several times I looked at my son and thought he looked like somebody who’d had a stroke,” Spear says.
“But I never knew a kid could have a stroke.”
That sentiment seems to be common among parents of young stroke survivors.
“How’s a parent supposed to know (what’s wrong) without even knowing (stroke) can happen?” asks Erin Grady, who found out two years afterward that son Sean had suffered a stroke before birth.
Grady, who lives in the Chicago area, says she’s glad she pushed for help long before her son’s diagnosis. He wound up receiving physical, occupational and speech therapy.
It can all be exhausting, she says. “We’re just busy every night and on the weekend.”
Mary Kay Ballasiotes knows all about that. Ballasiotes found out before daughter Michelle, who is now 10, was born that the infant had suffered a stroke. But that knowledge provided little comfort.
“I remember thinking, ‘I have no clue,’” she says. “They don’t give you a little booklet to follow that says this is Step 1, Step 2, Step 3.
Six years ago, Ballasiotes started her own support group, Childhood Stroke and Hemiplegia Connections of Illinois. Her goal was to create awareness to let doctors and parents know that this is happening and that there is help available.
“I gained as much as [the] parents [did], hopefully. To help them guide them, introduce them to other parents when and if they got the diagnosis, gave me a lot of pleasure.”
In particular, she says the group’s annual family picnic, where about 20 families fill the park, with kids running around in ankle-foot braces, is “fabulous.”
“They say, ‘Look at hers! It’s just like mine.’ They realize they’re not the only kid in the world wearing one. And parents see older kids playing normally [after stroke]. It energizes them so positively to see older kids living normal lives. That’s why local [support] is so important.”
Ballasiotes says parents are desperate for that support. “To be able to talk to another parent who understands, and for your child to see another kid who’s like them, you can’t measure how much that means to them.”
Other parents can also be a great help when it comes to understanding what comes next, or in finding good doctors and therapists.
Ballasiotes, who has just relocated her family to Augusta, Ga., is already talking about starting another group there.
Parents without a local group say their primary support has come from online communities, including the Children’s Hemiplegia and Stroke Association (www.chasa.org), www.HemiKids.org and http://www.pediatricstrokenetwork.com/.
Spear is working to build more out of her online experience, which includes a blog about Brendon. Last year she asked people to walk just to raise awareness. More than 200 showed up.
This summer, a local café hosted a golf tournament to benefit Brendon Spear. His mother plans to use the $4,000 raised to start a foundation.
“Our goal for the first year is to raise awareness in the community, to help people understand the warning signs, the symptoms of stroke, and to understand what the stats really are,” Spear says.
“My goal eventually is to try and get a panel of physicians to help, to get a celebrity who will be a spokesperson, to get funding and to try to start research. How many kids out there don’t have a diagnosis and don’t get treatment? Nobody should be finding out at four years old that their child had a stroke in utero.”
Symptoms of Stroke in Babies
Strokes become evident in babies either just after birth or not until they are four to eight months old. Those who are sick at birth usually have seizures (uncontrolled movements and rhythmic jerking) or apnea (spells where they stop breathing).
Others who have strokes at birth appear fine when they’re born. Six months later, parents may notice that their baby is using only one hand and not the other. This may be a sign that the less-used or unused hand is weak. Children don’t usually exhibit handedness (a preference for one hand over the other) until one year of age.
Parents who see these signs should have the child evaluated by a pediatrician, who may order an imaging study. If there is evidence of a stroke, the child can receive physical, occupational and speech therapies to improve his or her outcome.
Remember, stroke is an emergency! If you see signs of stroke in your child or any child seek immediate medical attention.
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