May is pediatric stroke awareness month. Here’s what to know about the condition.
For Megan’s daughter Kora, it started with hand favoring.
“Looking back at pictures you can easily see that my daughter favored one hand while the other was almost always fisted.”
Hand favoring isn’t supposed to happen before 18 months, but Kora was showing signs of this from an earlier age.
As it turns out, Kora experienced what is known as a pediatric stroke, a type of stroke that occurs in children, while Megan was still pregnant with her and her sister. (And hand favoring is one of the signs — more on this later).
There are two types of pediatric stroke:
- Perinatal. This occurs during pregnancy up through to when the child is 1 month old and is the most common type of pediatric stroke.
- Childhood. This occurs in a child ages 1 month to 18 years.
Though pediatric stroke might not be something many people are familiar with, Kora is certainly not alone in her experience. In fact, pediatric stroke occurs in about 1 in 4,000 babies and misdiagnosis or delay in diagnosis in children is still very common.
While there’s a great deal of awareness around adult strokes, this isn’t necessarily the case for pediatric strokes.
Family doctor, Terri, had her daughter Kasey when she was 34. The Kansas resident explains that she had a protracted labor, which is sometimes caused by an abnormally slow cervical dilation. She believes that’s when Kasey had the stroke. Kasey began having seizures within 12 hours of being born.
Yet even as a family doctor, Terri was never trained in pediatric stroke — including what signs to look for. “We never covered that in medical school,” she says.
The warning signs of stroke for everyone are often easily remembered with the acronym FAST. For children and newborns who experience a stroke, however, there may be some additional or different symptoms. These include:
Megan had a higher risk twin pregnancy. She was 35, overweight, and carrying multiples so her children were at a higher risk of developing certain conditions. Doctors knew Kora wasn’t growing as fast as her sister. In fact, they were born with 2 pounds difference, but it still took months for Kora’s doctors to realize she had had a stroke.
While it’s difficult to tell if a child has had a stroke while in the womb, the signs are likely to show afterward.
“If we had not had her twin to compare milestones to, I would not have realized how delayed things really were,” Megan explains.
It was only when Kora underwent an MRI at 14 months, due to her delay in development, that the doctors realized what had happened.
Developmental milestones While knowing the signs of pediatric stroke are important, it’s also vital to know where your baby should be on their development milestones. It can help to be on the lookout for delays, which may make you aware of stroke and other conditions that may be helped with earlier diagnosis.
Currently, she’s under the care of a neurologist and neurosurgeon to manage her epilepsy.
As for parenting and marriage, Megan explains that both have felt harder because “there are many more factors involved.”
Kora has frequent doctor’s visits, and Megan says she frequently receives calls from the preschool or daycare that Kora isn’t feeling well.
While many children who’ve had stroke experience challenges both cognitively and physically, therapy and other treatments can help them reach milestones and face those challenges.
Terri says, “The doctors told us that due to the area of her injury, we would be lucky if she could process speech and language. She would probably not walk and would be significantly delayed. I guess nobody told Kasey.”
Kasey is currently in high school and runs track at a national level.
Meanwhile, Kora, now 4 years old, has been walking nonstop since age 2.
“She’s always got a smile on her face and has never once let any [of her conditions] stop her from trying to keep up,” Megan says.
Both Terri and Megan agree that it’s important to create a support team for both the child and their family. This includes looking to family members, friends, co-workers, people in the pediatric stroke community, and health professionals.
Megan eventually found a wonderful sitter and has supportive co-workers to help out when needed. Both Terri and Megan also found solace and support from the Children’s Hemiplegia and Stroke Association (CHASA) groups on Facebook.
“Once I got hooked up with CHASA, I found so many more answers and a new family,” Terri says.
The CHASA communities offer online and in-person support groups for parents of pediatric stroke survivors. You can also find more information about pediatric stroke and support from:
- American Heart Association
- International Alliance for Pediatric Stroke
- Canadian Paediatric Stroke Support Association
Jamie Elmer is a copy editor who hails from Southern California. She has a love for words and mental health awareness and is always looking for ways to combine the two. She’s also an avid enthusiast for the three P’s: puppies, pillows, and potatoes. Find her on Instagram.