Michelle Ballasiotes suffered a stroke that changed her life, weakening the right side of her body and, doctors thought at the time, potentially hurting her future ability to speak.
Future ability, because at that point Michelle had never spoken. Unlike many of the millions of Americans who suffer strokes, Michelle suffered hers in the womb; she had not yet even been born.
As the American Heart Association releases the first comprehensive guidelines for childhood stroke on Thursday, Michelle, now 10, is among those hoping it will bring increased awareness of the fact that strokes can occur in children who need immediate assistance from doctors.
"I don't really know why I had a stroke, and that bothers me a little bit because I want to know why, and if there's any possible way that we could have prevented it from happening," she told ABC News.
Michelle has, in many ways, overcome the devastating effects that can follow stroke. She can speak without any noticeable sign of the affliction.
"I try not to let it hold me back, and I don't think it does," she said.
But she was also lucky. Doctors found evidence that something had happened while she was still in the womb, and she was able to receive treatment almost immediately after birth, having been diagnosed with stroke when she was three days old.
"She was one of the fortunate ones to get diagnosed so early," said her mother, Mary Kay Ballasiotes.
Michelle started physical therapy at six months.
"I think that has given her the head start to be normal … It's amazing, because she's been going to therapy every week for 10 years," said Mary Kay. "She's never had a day of speech therapy."
But many children are not as fortunate as Michelle, and Dr. E. Steve Roach, who headed the committee for the AHA's stroke guidelines, hopes this new paper will increase doctors' awareness of childhood stroke and change all that.
"There's a lot of expertise about it, but that expertise is clustered in a few places," he said.
Roach, a pediatric neurologist at Nationwide Children's Hospital and the Ohio State University Medical Center, noted that childhood stroke receives little attention, even though it is more common than childhood brain tumors, affecting one out of every 3,000 to 4,000 children.
With these guidelines, he said, he hopes to bring the information about childhood stroke to pediatricians who may not be near any centers that specialize in pediatric stroke.
Dr. Lori Jordan, a pediatric neurologist and director of the Johns Hopkins Pediatric Stroke Program, said that these guidelines do just that.
"I think they're excellent," she said. "I think they summarize a large body of literature in a way that physicians treating children with stroke can understand.
"There's been a lot of progress in the last decade. But a lot of what's out there is based on small numbers of patients or single centers reporting their experience with patients."
That lack of awareness of childhood stroke on the part of physicians has had some upsetting consequences.
Letitia Anthony of Edmond, Okla., remembers when her twins were born in 2004, and she noticed problems with her son Todd.
Although she and her husband work with adults who have suffered strokes, she said she didn't know they could happen in children — and it seemed, neither did their physician.
"My husband and I were not doctors, but we knew a little bit and we knew something was wrong. As we were leaving the hospital, I just broke down," she said.
Her son had suffered a stroke at birth. Although interventions have helped him do many things with other children, Todd still has some balance problems, which crop up when he tries to climb or ride a bike — he will fall off frequently. And he wears a brace on his leg.
But overall, he is doing better than Anthony could have expected after his birth.
"He's doing fantastic. At the time, the doctors had told us he may not walk and he may not talk."
But Anthony doesn't want other parents to have the same fears she did.
"I am hoping that more people have an awareness of it. We struggled at birth to get our physician to do anything," she said. "We are very excited this is getting open so parents don't need to struggle like we did."
Signs Parents Should Watch For
Jordan said that the increased awareness these guidelines hope to create will reach not only physicians, but parents as well.
Several doctors expressed concern that while parents who would immediately rush to get assistance for an elderly relative who stops speaking or shows weakness on one side of the body, they will not do the same for a child — who may then suffer further strokes in the days before they receive medical attention.
"Sadly, sometimes the hours or the days that go by after that is the time when the actual strokes can take place," said Roach.
And pediatricians want parents to know that they should not waste time seeking help.
"If you think your child is having symptoms of stroke, in particular, they look weak on one side of their body, their speech is slurred, then you should bring them immediately to medical attention," said Jordan.
One warning sign, she said, is if a child shows strong signs of right- or left-handedness before they are a year old. Since children do not typically differentiate before then, she said, that is typically a sign of weakness on that side of the body.
Strokes are actually most common in children between conception and one month of age, a time known as the perinatal period.
Roach notes that adults do not have as great a stroke risk as perinatal infants until they reach age 65.
Mary Kay Ballasiotes has high hopes for the AHA guidelines, not only to raise awareness of pediatric stroke, but also to increase research in the area.
"You're not going to do research unless the numbers are high enough to do that research," she said. "There are so many of them out there, and we really need to find out what is going on."
One of the benefits of these guidelines is that they not only give a comprehensive picture of childhood stroke, but also let physicians know which areas need further research, said Dr. Michael Noetzel, a pediatric neurologist at Washington University in St. Louis and medical director of clinical and diagnostic neuroscience services at St. Louis Children's Hospital.
"For those of us that stroke is a part of our daily practice, this is going to be a great resource for management of these kids," he said.
"The biggest impact is going to be … reducing morbidity once a stroke has been recognized," said Noetzel, but he also hopes that the guidelines help physicians identify children at risk to prevent those strokes in the first place.
Still, he cautions that parents need to be on the lookout for signs that something is wrong.
He listed a sudden onset of weakness in the arm and the leg on one side, a change in speech pattern, and a headache associated with unconsciousness as reasons why parents should seek help.
But while the question of how to prevent stroke remains unanswered, Ballasiotes, who founded a support group for childhood stroke survivors in Chicago, wants parents to know that their children who have already been afflicted can be helped.
"I would like parents to understand that they are not alone, that there is help out there, and these kids can live a normal life."
Her daughter confirmed those sentiments.
"It doesn't matter what they look on the outside — some of them look pretty disabled — but deep down, I know and they know that they are just like us," said Michelle.