With the support of our state Governor, Jay Inslee, the month of May in Washington has been deemed through a signed proclamation as “Pediatric Stroke Awareness month”. As a nation, we have supported the efforts of increasing awareness of stroke in general, however pediatric stroke falls in a separate category, one of which has received little awareness or research to date.
As a family of a Pediatric Stroke survivor, we share our story in hopes of increasing awareness among the community and advocating for more resources and support to all children and their families impacted by stroke.
We also want to provide hope to new families starting out in this journey that our children can and will overcome vast obstacles, especially with the help and support of available resources. A diagnosis is so much more than just a label; we can learn and be inspired by the strength and determination that can come from them.
Contrary to what most people believe, stroke is a potential risk for everyone, including children. Stroke occurs at the highest rate in infants younger than one month old. Approximately one in 1,600 to 4,000 newborns have a stroke each year. For children 1 to 18, stroke occurs in 11 out of 100,000.
This medically vetted information shared is not to create alarm, but rather awareness. Pediatric Stroke is often thought of as rare, but sadly it is not. It is real, and we encourage anyone to understand its signs, symptoms and treatment options.
Our daughter, Addison, survived her stroke at birth. The official medical term was “Perinatal Ischemic Stroke.” There were no medical indications when she was first born that something had occurred. Often times seizures after birth can be an indicator and require further medical treatment, but Addison was seizure-free and gratefully has continued to be. We went home as new parents full of joy for what the journey of raising another child in our family meant to us.
It wasn’t obvious at first, but throughout those first months we began to notice things that were concerning with our daughter’s development. She had a very hard time eating and struggled with sleep. By the time Addison was four-months-old, her left hand was always tightly in a fist. At six months, she completely favored her right side and wouldn’t bat at her toys or kick with both legs during play.
A parent’s intuition is a priceless gift and should not be ignored. It took time advocating for our daughter’s health and getting the appropriate doctors and documentation for support to our insurance before we were able to get a confirmed MRI that Addison had indeed suffered a stroke.
We had to learn how to become an advocate for her medical care very early on. To be blatant enough to ask those hard questions that we knew nothing about, to continually push for more information and above all to be sure we were building the best medical team for her care.
Any parent can agree, that when their child receives an ongoing medical diagnosis, it feels like just breathing becomes work; Support is vital, medically and emotionally, to ensure the best future for our children.
We are forever grateful for the services offered at Seattle Children’s hospital and for the early intervention services provided by Encompass in the Snoqualmie Valley. With any brain injury the sooner you begin therapy, the faster the brain can begin to try and compensate for the functions that have diminished.
There is obviously no cure for a brain injury. But, the brain can do amazing things, it can continue to rewire and support reduced functions.
Addison has made huge strides in overcoming challenges within her own body as a result from her stroke. We have experienced the greatest developmental delays in speech and motor function but continue to work on helping her to reach her greatest potential with the support from Encompass and Seattle Children’s. She will continue therapy throughout most of her childhood, so we find that it is imperative that we have these wonderful services to support our family. Her team of doctors and therapists has become an extension of our family and without them, we would be lost.
It’s not always easy, some days present harder than others, but as a family we take it one day at a time. Again, it is our greatest hope in sharing a little of our family’s experience, that we can continue to help with the awareness that is so vital to make a change for the sake of our children. With so many causes that can affect our children, we deeply appreciate the support in raising awareness for Pediatric Stroke.
As a family we have a public community Facebook site, “Pediatric Stroke Warriors”, in which we established to create a community of awareness for Pediatric Stroke. As well, you can seek information from your states early intervention services along with support from established non-profit organizations such as CHASA.org and International Alliance of Pediatric Stroke.
We thank you for your awareness and support.
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Here are past articles from Encompass:
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Here are past articles from Encompass:
- Celebrate Autism Awareness Month in April
- Toddler Tantrums—You Asked and the Encompass Toddler Experts Answered!
- Encompass Launches New Blog Inviting Local Parents to Ask Questions
