Almost 4 years ago we were given that medical diagnosis. Perinatal Ischemic Stroke. When I say “given”, it was more like a line drive straight to the stomach and heart, blindsided by such a medical diagnosis. The breath was removed from our lungs, the questions that flooded our minds but left us speechless, the very reality we knew… gone, in an instant. Those memories and emotions that came with it, can still feel staggering to me at times when I think of those first days when we were told that our daughter had suffered a stroke.

I assure you, this is not just a moment that our family faced, it’s a reality for countless families. For children of all ages.  Even though stroke is relatively common in children, there are scores of medical professionals that have never even treated a child who has had a stroke or received the education to know how. It took over 6 months for my daughter to be diagnosed with the stroke that she had been born with and further time to build the right medical team for her ongoing care. As parents, it took us even longer to find the right family support and to learn we were not alone.

When I think of all of this, and the fact that there are so many other families with these same stories, whether from birth or with an older child it leaves me with so many wishes for our children. So much that I wish everyone knew about pediatric stroke and the reality for so many kids. Some days I underplay what it’s like, this journey with a child and stroke. Sometimes I guard my words and worry I will scare someone with the facts about Pediatric stroke. But, maybe just maybe, we need to make ripples in the water for change. I want the words to sink in, to mean something to you. To spark a desire to bring the needed visibility to awareness, to give our children’s generation and parents a voice against stroke.

The real Warriors: A brain injury can’t be seen on the outside. You can’t see the void, the permanent damage on the right side of my daughter’s brain left from her stroke. With a simple glance, you may not even notice that her left side is weak, that she can’t use both her hands equally or that her left heel never strikes the ground when she walks.  The amount of work her little brain and body goes through to process stimuli in the everyday world is beyond anyone’s comprehension, even mine- but I know it’s work for her. I know the strength it takes for my daughter every moment to overcome the challenges in her body because of her stroke and I know she’s not alone.

Of children surviving stroke, roughly 60% will have permanent neurological deficits, most commonly hemiparesis or hemiplegia, a form of cerebral palsy. Beyond the initial stroke, there is the added risk of re-occurrence, the possibility of seizures and other long-term disabilities that affect children.  Therapy and rehabilitation very much becomes a normal part of daily life throughout childhood. These children experience a life most adults can’t even comprehend with constant tests, surgeries, therapy and medication- and they do so with such an unstoppable force. Overcoming so much one day at a time. Caregivers will often get the bulk of the credit, praise for doing exactly what anyone would do out of love, but its these children that are the real warriors.

Be the change: A stroke can happen at ANY age, and yet with the limited information and resources out there about it, Stroke is often the last thing thought among many medical professionals or families when it comes to a child. Many well-meaning attempts with articles trying to bring light to awareness are overshadowed by calling stroke in children “Rare.” Know this, a Stroke is a medical emergency at ANY age, and the shear chance that it can happen to your child, demands attention to the signs of Pediatric Stroke.

The harshest reality is that stroke in children is among the top 10 causes of mortality. It has to matter. It has to matter to medical professionals so that they can learn more about it, how to recognize it and how to treat it in a timely manner. It has to matter to anyone that has a child or works with children because if those signs of stroke were ever present, every second counts.
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My hope, a hope shared by so many is that you will help to amplify the awareness- to get the word out. To cause a ripple effect in the knowledge that strokes in children are indeed real and how important it is to recognize the signs rapidly. If it makes a difference in one child’s life, then you can bet the awareness you shared is worth its weight in gold.
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