When Khrissy Bartolowits of Reserve gave birth to her second son, Jacob, on June 5, 2003, she had no inkling that stroke was something that could occur in newborns or young children.Annie O'Neill, Post-Gazette
As part of his physical therapy at the Children's Institute in Squirrel Hill, Jacob Bartolowits, 2, has to try to kick a ball. The effects of a perinatal stroke affected his leg muscles and he is still learning how to walk.
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You can find more information on the various forms of stroke in children, both before and after birth at www.pediatricstroke.org.
There is an online support network for parents of children who have suffered stroke before or after birth at www.pediatricstrokenetwork.com.
Her pregnancy had been fairly normal, but Jacob had to be delivered a month early in an emergency C-section. Doctors were concerned about his heart rate and it turned out it the umbilical cord was wrapped around his neck twice.
He spent 10 days in the hospital and when Khrissy and her husband, Tim, finally brought him home, she said, "for the first four months, all he did was cry" as if he was in pain all the time.
The couple didn't know it then, but Jacob had suffered what's called a perinatal stroke, defined as occurring between 28 weeks gestation and 28 days after birth. Stroke that occurs in children after that time is called pediatric stroke, though the former is more common, according to Dr. Amy Goldstein, a neurologist and expert on stroke a Children's Hospital.
For children who suffer from a perinatal stroke, a pair of problems can delay diagnosis and treatment.
First, unless the newborn has seizures or apnea (difficulty breathing), parents may not recognize a problem until the time a child should be starting to reach some developmental milestones, such as reaching for objects or walking, Goldstein said. Choosing a strong hand preference before the age of 1 can also be a sign that one side of the body is weaker.
Second, a child with motor difficulties due to stroke may first be taken to an orthopedist, thus delaying diagnosis, which can only be made by an imaging scan of the brain.
For the Bartolowitses, Jacob's motor difficulties at around 5 months were what would lead them to the diagnosis.
"I noticed he wasn't using his left hand to play with toys," his mother said.
Still, not overly concerned, she said "I thought I'd mention it to his pediatrician at the 6-month check. We told our doctor and he sent us to Dr. Goldstein," then at Mercy Hospital.
The causes of perinatal stroke and of pediatric stroke often are impossible to pinpoint.
According to the National Institute of Neurological Disorders and Stroke, common causes of stroke in children can be congenital heart disease or sickle cell disease. A history of infertility or infections in the membranes of the uterus in the mother may cause perinatal stroke, according to a University of California at San Francisco study.
"Most of the time we can't find a cause," to perinatal stroke, Goldstein said. "Sometimes we have clues like congestive heart disease; if the mom has had any history of thrombosis [clotting], during pregnancy or if there is a history of clotting disorder in the family."
Stroke is when the blood supply to the brain is interrupted, causing tissue death and loss of brain function. The interruption can be caused by a clot or a ruptured blood vessel.
Researchers at the University of California at San Francisco have found that perinatal stroke occurred in about 1 in 5,000 births, though the rate could be higher because an unknown number of cases likely go undiagnosed.Steve Mellon, Post-Gazette
A member of Khrissy Bartolowits' online pediatric stroke support group assembled this quilt with the names and stories of some of the children who have had strokes.
Click photo for larger image.Annie O'Neill, Post-Gazette
Jacob Bartolowits with his mom, Khrissy Bartolowits, at the Children's Institute in Squirrel Hill.
Click photo for larger image.
UCSF researchers also reported in the July 11 Annals of Neurology that high rates of disability, including 58 percent with cerebral palsy, 39 percent with epilepsy and 22 percent with behavioral problems such as hyperactivity, developed among infants who suffered perinatal stroke.
In fact, Goldstein said, any child diagnosed with cerebral palsy without any cause being given should have a brain imaging scan to rule out stroke.
When Jacob's parents took him to see Goldstein, Bartolowits said, "she mentioned stroke and we were very taken aback by that.
"We had never heard a baby could have a stroke."
An MRI brain scan was scheduled and the results confirmed Goldstein's suspicion. Jacob had had a stroke in utero, probably sometime late in the first trimester or beginning of the second trimester.
A blood clot may have traveled through the umbilical cord to his brain, but genetic tests on his parents revealed nothing that might have been contributing causes to his stroke.
"It was just a complete fluke," his mother said.
Jacob, now 2, still isn't walking, but his prognosis is good, his mother said. He undergoes therapy both at home and at the Children's Institute in Squirrel Hill -- "He's the champion commando crawler" his mother said.
Because the stroke affected his muscle tone, particularly in his legs and his left hand, he receives a muscle relaxer called baclofen and Botox. Because Botox paralyzes some muscles, it forces those weakened by the stroke to work. He's wearing braces and making progress toward walking and is now able to open his left hand a bit, which he wasn't able to do before.
For Goldstein and other experts on stroke in infants and children, the key issue is for parents to trust their judgment if an infant or child is exhibiting difficulty with motor weakness on one side of the body.
"Parents may be too shy to ask their pediatrician about it, or feel they're being too worrisome," Goldstein said. "Or the symptoms just appear, even though its [the brain damage caused by the stroke] been there for months.
"Any child who presents with [weakness on one side] should have a brain imaging," she said.
And for parents of children who have suffered perinatal stroke, there's an added bit of reassuring news.
"What we think about perinatal stroke at this point," Goldstein said, "is there really doesn't seem to be a risk of recurrence, so we do not recommend medication such as aspirin or other blood thinners."
Katy Buchanan can be reached at firstname.lastname@example.org or 412-263-1523.