“I didn’t know there was such a thing” is a sentence Jessica Spear hears often, when talking about strokes in unborn, newborn, and young children. However, the week surrounding birth is the most concentrated risk period for ischemic stroke in one's entire lifetime. Perinatal stroke - occurring either before birth, or within seven days of it, and neonatal stroke - occurring within 28 days of birth - are common causes of cerebral palsy. This is the case for now 12-year-old Brendon, whose pre-birth stroke went undetected for over the first year and a half of his life. His mother, Jessica, founder of the World Pediatric Stroke Association, shared their story with us.
A guest post by Jessica Spear
In September 2005, I gave birth to my first-born child, Brendon, a seemingly healthy baby boy. My husband, Stephen, and I were elated to be new parents to our beautiful son. After 28 hours of labor and an unplanned caesarian delivery, Stephen insisted on sending Brendon to the hospital nursery for the night, so I could get some much-needed rest. I was resistant. The thought of being separated from my baby was unbearable to me. The first five days of Brendon’s life, I didn’t want anyone to hold him, with the exception of the nurses in the hospital. All contact with my baby had to be under my supervision.
I attributed my feelings to fatigue and postnatal hormones.
In hindsight, I believe it was mother’s intuition.
What were the early signs of stroke?
Within two weeks after his birth, I observed Brendon was unable to turn his head to the right. When Brendon started to kick his left foot, his right foot would not follow until weeks later. In the months to follow, it seemed Brendon’s entire right side was unable to keep up with the left. However, at every newborn checkup his pediatrician reassured me that Brendon was thriving and developing typically. At that point, I just assumed he was going to be left hand dominant.
Sleep was an issue for Brendon, as it is for most newborns. Yet, as time went on, he never slept through the night. He slept in one to two-hour increments, leaving me exhausted and severely sleep deprived. Brendon, on the other hand, always woke up refreshed. When I sought help for his sleep issue, advice on how to get Brendon to sleep through the night flooded in. Nothing worked, I was left feeling overwhelmed and defeated.
It was not until Brendon was 10 months old that I was able to finally describe to his physician a tangible concern, one that did not seem typical of infants. Brendon’s right foot turned out and under. When I stood him up and held his hands to help him take steps, he would drag his right foot behind his body. At his 10-month checkup I was reassured not to worry, that his foot would eventually straighten out in its own. As Brendon developed more symptoms appeared. With each new symptom I expressed concern over, I was looked down upon. I was accused of searching for something that simply was not there. Once a specialist labeled me as a “paranoid-first-time mother.”
Specialist after specialist, month after month, I grew more concerned and fought harder, against the judgement of others, my husband included (he was in denial).
In April of 2007, at 19 months old, Brendon was diagnosed with a perinatal stroke, cerebral palsy - specifically right hemiparesis, and a speech deficit.
What were your emotions before and after Brendon's diagnosis?
The first time Stephen and I had heard of strokes in children, much less newborns, was when our son was diagnosed. The simplest way to describe my feelings leading up to the stroke diagnosis was sheer desperation. At times I felt crazy, often going against my gut, a place within our physiological makeup that warns us when something is wrong. I constantly flipped back-and-forth between the feeling that I was overreacting to nothing, and the feeling like something was terribly wrong with Brendon’s development.
Ultimately, deep down, I knew I needed to fight for answers to help my baby. I felt like it was just me and him against the world. It was a lonely and scary time. My saving grace, through it all, was Brendon’s love for life and his bright smile. Once Brendon was finally diagnosed I was not relieved. The desperation intensified. I felt as if I were in a race against time. When it comes to stroke, TIME IS BRAIN… at ANY age!
When I revisit those feelings I still find myself feeling the sheer desperation.
How did your role of mother change to include caregiving?
I went into an accelerated mode! The title of mother bear was always there, but it grew stronger and fiercer as I was instantly thrust into the role of advocate for a stroke survivor, who just so happened to be a toddler.
Funny thing is, in looking back, I was always that fierce advocate – as most mothers are for their children. The only difference was the fact that I now had a diagnosis to get people to finally listen to me, in order to help Brendon. The challenge at the time of his diagnosis was most people had NEVER heard of a perinatal stroke, or strokes in children. I would be wealthy if I were paid every time I told someone about Brendon and heard the response, “I did not know there was such a thing – strokes in the unborn, newborns, children, or adolescents.”
At first, I longed for someone to tell me how to take care of my little stroke survivor. I wanted a one-stop-shop for pediatric stroke, a place to get all of Brendon’s needs met. It occurred to me that I needed to be the one to coordinate Brendon’s plan of care, once I realized there was no such place. When it came to Brendon, I was the expert. I had his best interest at heart. It was my job to seek out the best medical experts for his needs. Ones who could consult me on how to improve the effects of the stroke. I built a team of medical professionals to help Brendon obtain the highest level of functioning possible for him.
I had to learn to balance the feeling of longing to fix everything for my child and the feeling of needing to be tough - to push him to work in therapy, to wear his brace, to do his daily stretches, and to slow down while speaking, utilizing the tools he has to communicate more fluidly. My wish for Brendon has always been for him to enjoy his life, to be the best he can be and to never settle for anything less.
I empowered Brendon to become an advocate for himself. Someday he will be independent and determine what is important for him.
What are the ongoing challenges?
I sit here, smiling, as I think to myself: life, in and of itself, is so challenging – stroke or no stroke.
Brendon will always be a lifetime survivor, carrying with him the neurological effects of the stroke. The challenge is when he grows, is fatigued, is overexcited, or sick, his right side resists. When he speaks his words are stammered. If you ask him what his greatest challenge is he will tell you his speech. Once Brendon started speaking, at age 29 months, the words have never stopped. He always has something to say, it is usually thoughtful and profound.
A significant challenge for Brendon today is his vulnerable age - his peers are not always thoughtful and considerate. This weighs heavy on his self-esteem, he has compared his speech and writing ability to other kids. Both are a form of expression. Because of the damage caused by the stroke, Brendon has to take extra steps to get the words out of his brain, both written or spoken.
Together, Brendon and I work on the issue of ignorance of others. We educate people about differences. We tell his story of perinatal stroke and the lasting effects in hopes of including all children with outward differences. People become accepting when they are enlightened.
My philosophy: When you know better, you do better.
The financial burdens of therapies and coverage are an ongoing challenge. Balancing time between what Brendon needs physically and letting him simply be a child, can be a challenge. Determining when he needs more time stretching and strengthening, working hard, verses just being. Along the way, I learned play and free time are therapeutic for him.
What advice would you now, with the benefit of hindsight, give yourself back when Brendon was a littl'un?
I absolutely love this question. If only I could go back and be more gracious unto myself.
I would tell myself to take deep breaths, frequently. To slow down. Remember you are a mother, first, and that this stroke will never define Brendon if I do not let it.
I would tell myself, people will act differently towards us because they are scared. They don’t know how to act around us, and that doesn’t mean anything against us. The behavior of others during your darkest hour reflects upon them and their ignorance of the situation. I may have been that way if I didn’t experience it myself.
Always take joy in the little things– Brendon’s ability to pick up a stick and wave it in the air, pretending to be a warrior, to imitating the birds he adores that fly overhead, the flowers he picks and presents to me with a kiss, his love for books...
Take joy in those treasures, do not constantly look to the future, for the future has no guarantees.
By all means TRUST YOUR GUT!
It is your job to ask questions and seek answers. Do not stop until you understand the answer you have been provided.
Why did you start The World Pediatric Stroke Association?
During our journey with pediatric stroke, I found there to be a tremendous vacuum for awareness and education for pediatric stroke. This had to change. No one should ever have to go through what Brendon and I went through to get help. The signs and symptoms displayed, although subtle, should have been more extensively looked into. The only way to make a change happen is to be a part of the change.
Inspired by Brendon, I set out to fill the vacuum for awareness and knowledge.
The first big move for change was creating an awareness event – a walk/rally for pediatric stroke. It was 5 months after Brendon was diagnosed, in the month of September - the month of his birth. I turned it into a celebration, something positive. Brendon displayed so much resilience, despite the lack of treatment due to the lack of awareness.
Once Stephen came to terms with Brendon’s diagnosis, he became more supportive. He asked to name the event Brendon’s Smile… Raising Awareness for Childhood Stroke. Stephen said that every time he looked at Brendon’s smile he knew everything was okay. He wanted others to take refuge in his smile, knowing that no matter what, it would be okay.
In 2009, with the guidance of Dr. Bradley Schlaggar, from the Washington University School of Medicine, we established Brendon’s Smile as a not for profit. Our mission: To raise awareness for and educate the general public and medical professionals about pediatric stroke.
In 2015, after many attempts at global awareness, we evolved into the World Pediatric Stroke Association. Our mission: To increase awareness and knowledge among both the general public and medical professionals about strokes and cerebrovascular disease in the unborn, newborns, and children up to 18 years of age. To support research that involves those impacted by pediatric stroke.
Another personal goal as the founder and president of the WPSA is to lead by example – share my work as an advocate and a parent.
It is my goal to empower each person who reads the information WPSA provides, regardless of diagnosis and to reassure people that they are not alone… there is so much hope.
We would like to thank Jessica for sharing her family's story with us. To learn more about WPSA, visit their website.
Other stroke-related entries on the MyTherapy blog: