With May being National Stroke Awareness Month, we find as a family of a Pediatric Stroke Survivor, that now is the time to bring the much needed awareness to Pediatric & Childhood Stroke. Contrary to what most people believe, stroke is a potential risk for everyone, including children. Strokes can occur in infants, children, young adults and can even occur before birth. It is a not-so-uncommon phenomenon, but it is one that needs further research and awareness.
Our daughter Addison suffered a stroke at birth. The medical term being a Perinatal Ischemic Stroke. We had no idea the journey we were about to embark when she was born. She is a happy thriving two year old, but this journey has been a long one with numerous highs and lows. Many children who have had a stroke spend a great majority or their childhood getting treatments and therapies for the developmental challenges that stroke left behind. Our daughter included.
When Addison was around 4 months old we began to notice that she kept her left hand tightly in a fist, she wouldn’t bat at her toys with her left like she did her right or kick with both legs. It wasn't a hugely noticeable thing at first, but to us as parents it was concerning. As time passed and we continued to go to her well baby checkups, these noticeable things began to become very concerning. She had continued difficulty in eating and sleeping. She continued to neglect her left side and above all else, there was always that aching feeling for us as her parents that something was just “off.”
Most doctors are aware of the possibility of a stroke in children, but with little awareness or training, they often take the conventional approach first. It is our hope that with growth in awareness that the community overall will receive the knowledge to be able to recognize and seek treatment for stroke in children quickly. We had to learn to become an advocate for Addison’s medical care very early on. To ask those hard questions, to push for more information, to be sure we were building the best medical team for her care.
When Addison was 8 months old we were finally able to get insurance & doctors to align and allow for a medical imaging test, MRI. We were frozen in disbelief when the neurologist confirmed that she had in fact suffered a perinatal stroke. Any parent can agree, when their child receives an ongoing medical diagnosis, it feels like just breathing becomes the hardest part in the beginning. Support is vital. Medically and emotionally. 50% of children who have survived stroke will never receive a clear answer as to why the event happened in the first place. Our daughter is overall very healthy, with that one exception of a brief moment in time that impacted her greatly.
Her Neurology team was wonderful in laying the framework on what steps we needed to start taking. Quick on-going therapy is key! The neuro team explained that how with a brain injury the sooner you begin therapy, the faster the brain can start to compensate in other parts of the brain for the functions that have diminished. There is obviously no cure for a brain injury. But, the brain is an amazing thing, it will begin to rewire. It will begin to work in other ways to provide support. The medical term is plasticity, and it’s amazing. With Addison’s age at diagnosis, Early Intervention Services were our greatest tool. She began feeding & speech therapy, physical therapy and occupational therapy each week at 9 months of age, and has continued and will continue throughout her childhood.
Our daughter has made huge strides in overcoming challenges her own body has created. We have experienced the greatest developmental delays in speech and motor function but continue to work on getting our daughter to reach her greatest potential. It’s not always easy, but we take it one day at a time. The older she gets, the more assistance we are able to find for her. Rehab medicine has now become another powerful tool in helping her to walk unassisted and we find each day that she continues to use her left hand for more activities in her daily life.
With nearly one in six children in the U.S reported as having a disability, we all know- or are a part of- a family that has distinctive challenges and triumphs. Life in a special needs world can be challenging, but as well beautiful. Having a daughter who is a stroke survivor obviously changed us, it opened our eyes not only to this whole other world that we are a part of now, but as well to all the things us as parents go through with our children. It is our greatest hope in sharing our family’s experience with Pediatric Stroke that we can continue to help with the awareness that is so vital to make a change for the sake of our children. We need more support, more medical answers and therapies and above all more research to further help our children overcome what Pediatric & Childhood stroke has left behind.
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