“Your baby had a stroke.”
Heather Roberts knows all too well what it is to hear these words – which will shock any parent who hears them, to the core.
This shock is for a multitude of reasons, including these two:
Learning something is wrong with your child, and
Most people believe that strokes only happen in the elderly population, therefore, taking a parent by surprise.
Heather is mom to 4-year-old Violet, a perinatal stroke survivor. While Violet was born a survivor, her diagnosis was delayed – this occurs in approximately 50 % of strokes in newborns. While the signs and symptoms of stroke were present in her daughter – handedness or hand preference before the age of 12 months – the lack of awareness prevented an accurate diagnosis until Violet was 19-months old.
In trying to grasp Violet’s diagnosis and all that it entails, Heather started seeking answers to the flood of questions that began to consume her.
When? How? Why?
What does this mean for my child?...
In Heather’s search for answers she learned that most people do not know that strokes happen to the unborn, to babies, children and adolescents; that strokes, in fact, happen at ANY age.
Several months ago Heather contacted me to better understand pediatric stroke and raising awareness. It has been such a pleasure working with Heather, as her passion for this mission runs deep.
Heather was willing to take some time from her busy schedule to share with me, via a telephone interview, about her daughter and the work she is doing for pediatric stroke.
Me: “Describe Violet for me.”
(I could sense joy emanating from Heather when she began to describe her daughter.)
Heather: “She is determined. Vibrant. Happy. She is funny - just makes you smile with her facial expressions. She’s very kind and wants to help all of the time. She loves to pretend play. She pretends she’s a mom and always has a baby. Violet is an avid athlete.”
Violet participates in the Young Athlete’s division of the Special Olympics, in Grand Junction, Colorado. Her sports are swimming and, then, gymnastics. She’s been invited to take an 8-week session swim program provided by the Michael Phelps Foundation.
Me: “How did you get involved with raising awareness for pediatric stroke?”
Heather: “It was when Violet started preschool, in August 2015. After I went through the stages of grief, including denial, it was when I came out of the emotional stage of depression that I wanted to know more. We don’t have a cause (for her stroke). I asked myself, ‘Where do we go?’ It started at school when I saw her peers, they didn’t struggle or have a hand preference. Violet struggled. I wanted the teachers and nurses at her school to know about her, about pediatric stroke.”
Last month, Heather was invited to speak about pediatric stroke, for a 30-minute session, at a health fair at Violet’s preschool. She called upon me to help her prepare with information about pediatric stroke to present.
Me: “Tell me about speaking at Violet’s school?”
Heather: “I started by sharing Noah’s story.” - (#RememberNoah)
“Then I shared the two categories of pediatric stroke.” – newborn and children.
“I shared the risk groups.”
“Then I shared Violet’s story – the timeline.”
“I had an Educational Assistant pass out a flier, printed back to back. The ‘Think Stroke’ on one side and information on hand preference on the other side.”
“It was really cool!”
“I ended with the 3 facts you shared.”
The 3 fast pediatric stroke facts:
In children strokes are more common than brain tumors,
According to the CDC stroke is one of the top 10 causes of death in children, ages 1 – 18 years of age, and
To many people’s surprise, the most focused period of risk for ischemic stroke in your lifetime is the week you are born.
Me: “How did you feel after speaking to the school?”
Heather: “EMPOWERED is the biggest word! I felt like, ‘Yes, I made a difference!’”
Heather is excited to continue with this mission to raise awareness for pediatric stroke and the World Pediatric Stroke Association is excited to have her join the cause!