Being the mother of a pediatric stroke survivor, I am thrilled that this month marks Pediatric Stroke Awareness Month in Washington state. As a nation, we have supported efforts of increasing awareness of stroke in general, however, pediatric stroke has received little awareness or research to date. Here we share our story in hopes of increasing awareness among the community, advocating for more resources and support for children and their families who have been impacted by stroke, and to provide hope to families starting out on this journey that our children can overcome vast obstacles.
Contrary to what most people believe, stroke is a potential risk for everyone, including children and teens. Stroke occurs at the highest rate in the first year of life, and is most common between the 28th week of pregnancy up until one month after birth. Approximately one in 1,600 to 4,000 newborns have a stroke each year. For children age 1 to 18, stroke occurs in 11 out of 100,000 kids and teens. I share this information not to create alarm, but rather to spread awareness. Pediatric stroke is often thought of as extremely rare; sadly it is not. I know far too well that it’s real, and we encourage other parents to understand its signs, symptoms and treatment options.
Our daughter, Addison, survived her stroke at birth. Medically speaking, she suffered from a, which means her blood vessels were unable to carry oxygen to her brain. There were no medical indications when she was first born that something had occurred. Often seizures after birth can be an indicator, 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 the first few months of her life we began to notice things that were concerning about our daughter’s development. She had a very hard time eating and struggled with sleep. By the time Addison was 4 months old, her left hand was always tightly in a fist. At 6 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. We knew it was time to see a doctor.
In our quest to find a diagnosis, it took time advocating for our daughter’s health and getting the appropriate doctors and documentation for our insurance to allow the MRI that confirmed 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, both medically and emotionally, to ensure the best future for our children.
Our search to find the best medical team led us to Seattle Children’s Hospital where we were lucky to find an amazing team of neurodevelopmental, neurology, rehabilitation medicine and occupational therapy specialists all in one place, making the coordination of care for a child with a complex medical condition much more seamless. We are forever grateful for the incredible care and services offered at Seattle Children’s. Her team of doctors and therapists has become an extension of our family and without them, we would be lost.
We learned that with any brain injury, the sooner you can 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. The brain can continue to rewire and support reduced functions, especially in developing children.
Addison, now 2 years old, has made huge strides in overcoming challenges that resulted from her stroke. Her greatest developmental delays have been in speech and motor function, but we continue to work on helping her reach her greatest potential with the support from Seattle Children’s and Encompass, an early intervention service provided by the state that we also found to be a great resource.
Addison’s biggest milestone occurred a few weeks ago when she took her first steps on her own! Needless to say, we were thrilled and she has been walking without her walker ever since.
Addison 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. In the next year, we’re pleased that Addison will have the opportunity to participate in Seattle Children’s customized constraint induced therapy (CIT) where occupational therapists help kids build strength and function in the weak side of their body, eventually allowing them to use both arms equally.
It’s not always easy, some days present harder than others, but as a family we take it one day at a time. It is our greatest hope that in sharing our family’s experience, and by establishing the public community Facebook page, Pediatric Stroke Warriors, where families affected by stroke can come together, we can continue to help bring awareness to this issue and incite change.
These children are not defined by their diagnosis and we can learn and be inspired by their strength and determination. I am inspired by Addison each and every day. She never ceases to amaze me with her resilience and fighting spirit, and I can’t wait to see what her future holds.
Read more about Kaysee’s advocacy on the Seattle Mama Doc blog.