Stephen and Jessica Spear of St. Louis, MO, remember the first time they saw their son, Brendon. It was on a 3D ultrasound when Jessica was 28 weeks pregnant. The two marveled at how their son seemed to demonstrate a left-hand preference. “We joked that Brendon was going to grow up to be a left-handed pitcher for the St. Louis Cardinals,” says Jessica.
At the time, the couple had no reason to suspect that Brendon's early hand preference was actually a symptom of a stroke that he had sustained while in the womb, nor did they realize that hand preference should not be so visible or clearly defined that early in development.
Figure. Jessica and ...Image Tools
“It wasn't until much later that my husband and I learned that strokes in children are as common as childhood brain tumors,” Jessica says. “Yet most people are unaware that infants and children can have strokes.”
When Brendon was born in September 2005, he was a happy baby who charmed family members with his contagious smile. Although he appeared healthy, Jessica became concerned when she noticed her son never moved his head to the right.
“I initially thought he might have a hearing problem,” says Jessica. As the months passed her son displayed more puzzling symptoms. At nine months, his right foot seemed to be turning out, and Brendon would drag it when he tried to walk. And while he tried to talk, his speech was limited.
“At four months, he said ‘Mama’ and ‘Dada’ and then after that he only made noises,” says Jessica who was told at Brendon's nine-month well-baby checkup that her son's right foot would correct itself by the age of two and that there was no cause for concern.
Yet Jessica wasn't convinced.
A “PARANOID PARENT”
At 13 months, when Brendon tried to walk, he could not lift his right leg, his right foot turned out at a 90-degree angle and he would fall to the floor. Jessica, who had seen several doctors by this point, only to be told not to worry, was given a referral to an orthopedist, who like the other doctors they had seen, assured her that Brendon was fine and that lots of kids had problems when they first learned to walk.
“I was treated as though I were a paranoid parent,” Jessica says. “Yet in my gut, I knew something was wrong.”
Jessica says she was fortunate to get support and validation from a parent educator in the Parents as Teachers program in the State of Missouri. The educator encouraged her to trust her gut instinct and to have Brendon evaluated by the state's Childhood Early Intervention program.
Finally, 19 months after his birth, and with his mother continually pushing for answers, a doctor figured out what was wrong with Brendon. An MRI showing Brendon had damage on the left side of his brain — which affects motor control on the right side of his body — confirmed the stroke diagnosis — and an alert mother's instincts.
Figure. Now five-yea...Image Tools
“I remember telling my husband, when Brendon was about a year old, that he was favoring the left side of his body almost as if he'd had a stroke,” says Jessica, who was once employed in the admissions department of a nursing home and worked with many geriatric stroke patients. “But of course we both thought that was ridiculous, because we had never heard of a baby having a stroke.”
Doctors believe that Brendon's stroke was caused by a blood clot that formed in the placenta. Because he was hitting many of his developmental milestones on time, this contributed to a delay in accurately diagnosing his condition.
Researchers are still trying to fully understand the causes of neonatal strokes.
“We believe these strokes happen right around the time of birth, and are probably related to multiple factors coming together to cause a blood clot to go to the [baby's] brain,” says Heather Fullerton, M.D., director of the University of California, San Francisco Children's Hospital's Pediatric Stroke and Cerebrovascular Disease Center. “These strokes may also be related to inflammation or infection of the placenta, or a blood clotting disorder in either the mother or the baby.”
SPREADING THE WORD
Realizing other parents of young children might also be in the dark about the symptoms of stroke, the Spears established Brendon's Smile, a non-profit that raises awareness of pediatric stroke among both families and medical professionals.
A former police officer, Jessica quit her job to focus full-time on Brendon and the foundation, and has lobbied Congress on behalf of Brendon and other children who have survived a stroke. She continues to work with the Children's Hemiplegia and Stroke Association and the American Heart Association to raise money for research and education.
Now five-years-old, Brendon is doing well but has long-term neurological effects. He receives regular physical therapy to strengthen and coordinate the muscles on his affected right side. For a while, he struggled with aphasia, the partial loss of the ability to speak or understand speech.
Figure. This photo o...Image Tools
“Brendon has been diagnosed with cerebral palsy and also stutters sometimes when he gets frustrated,” says his mom. “He undergoes speech and physical therapy and will continue to do so for the foreseeable future.”
A handsome blond-haired boy with a mischievous smile, Brendon recently earned his yellow belt in karate and loves riding his bicycle and playing at school with his friends. He enjoys soccer and swimming and playing with his baby sister, Adelyn, born in Sept. 2010.
Jessica notes that each growth spurt Brendon experiences wreaks havoc on his body as muscle spasticity increases and his body becomes increasingly asymmetrical because the bones on his right side grow but the ligaments attached to them lag. She worries that he may need a hip or knee replacement when he is in his twenties.
Figure. Brendons reh...Image Tools
“The one silver lining in receiving Brendon's diagnosis later was that we were never given a reason to believe he might never walk or talk,” Jessica says. “We had already seen him try so hard to communicate and walk. He's a very strong-willed child and he believes anything is possible.”
EARLY DIAGNOSIS IS KEY
Studies show that as many as one fifth of children who have had strokes are at risk of a recurrence, and the second stroke can be predicted accurately through brain scans routinely used to diagnose adults but inconsistently prescribed for children.
Accurately diagnosing stroke in a child is also critical to prevent recurrence, stresses Rebecca N. Ichord, M.D., director of the pediatric stroke program at Children's Hospital of Philadelphia.
“A second stroke typically occurs within days or a week of the first stroke, and if not properly diagnosed, doctors can miss that window, in which case it might be too late to implement effective treatment,” explains Ichord.
She applauds the efforts of Jessica and other parents who are trying to educate front-line providers about stroke as a possible cause of sudden neurologic illness in children. While knowledge of pediatric stroke is common among neurologists, Ichord notes it's less so among pediatricians, emergency room physicians, family doctors and parents — something she is also trying to change by promoting awareness at medical conferences and in community settings.
RIGHT-SIZING STROKE TREATMENT
Figure. Brendon enyo...Image Tools
The first-ever clinical guideline on treating pediatric stroke, published in the September 2008 issue of the journal Stroke, recommended a very different treatment approach than with adults. Whereas stroke in adults is primarily caused by atherosclerosis, risk factors in infants and children are diverse and include infection, congenital heart defects and immune system disorders.
Ichord notes that while most babies can recover from a stroke within two to three months, many require additional physical, occupational and speech therapy to help with learning and motor skills. Many infants may not show signs of deficits immediately following the stroke, but they become apparent as the children grow older. Four of five newborn infants who experience a stroke around the time of birth will develop neurologic disorders such as cerebral palsy, epilepsy, or language delay.
In a recent cost analysis study, researchers found that stroke in children costs about $42 million annually in the United States, and as the Spear family has learned first-hand, many of those costs aren't covered by insurance.
“We have a great insurance plan through my husband's employer but it's still been a fight to get therapy,” Jessica says. “Most insurance plans will only cover 20 physical therapy visits a year, so we've exhausted our coverage by April.”
Ichord and the Spear family are united in their hope that ongoing research will shed light on preventing childhood stroke.
“When Brendon is old enough, I know he'll want to join me on Capitol Hill and increase awareness of pediatric stroke,” Jessica says. “I hope our work will help to fund research that will prevent strokes and improve outcomes.”
▪ The American Stroke Association provides information on pediatric stroke, treatment options and support services for families: www.strokeassociation.org/children
▪ Brendon's Smile helps to raise awareness and funding for pediatric stroke, offers support services to children who have sustained a stroke and to their families: www.brendonssmile.org
▪ Children's Hemiplegia and Stroke Association provides assistance, information and counseling to families, as well as a list of pediatric stroke studies that are enrolling children: www.chasa.org
▪ CaringBridge is a social networking website that connects family members dealing with a serious medical issue: www.caringbridge.org
▪ Hemi-Kids offers online support and networking with over 1600 families, including an email discussion group: www.HemiKids.org
▪ Pediatric Stroke Network, Inc. is an online support group that provides, updates on research, information on clinical trials that are enrolling children and tips to help increase awareness: www.pediatricstrokenetwork.com
▪ Pediatric Stroke Walk information on how to join or organize a community walk to raise money for research and promote awareness of pediatric stroke: www.pediatricstrokewalk.org
© 2011 American Heart Association, Inc.