May is Pediatric Stroke awareness month, and in honor of the upcoming month we would like to republish this downloadable info graphic! Pediatric Strokes signs can be very different from adults, so it’s important than anyone who is around children is aware of these signs. Time is Brain at ANY age, and pediatric strokes DO NOT discriminate! Please download and share your knowledge.
Thank you to our friends at Peekaboo Magazine in Northwest Arkansas for all of their continued support of The Bellaflies Foundation! Your dedication to pediatric stroke awareness is truly Making a Positive!
We are proud to announce Jacob Rodriguez as our Strides for Strokes 2016 honoree!!
written by: Kayla Rodriguez
How do I tell Jacob’s story? How do I convey the joy of his birth and later the mourning of what his life could have been? How do I make sense of it? These are some of the many questions I have pondered so many times since Jacob’s diagnosis.
February 2014. I was finally getting to the end of a long birth process when I heard the monitor beeping. I saw the look of confusion on my husband’s face, but I knew what the beeps on the monitor meant. I knew the nurse was paging the doctor; I knew my precious unborn baby was in distress. His heart rate dropped and was not coming back up. Then there was a blur and things seem to be moving in slow motion. I heard “Emergency C-section”—words many pregnant women fear. After it was all finished, Jacob came into the world at 7 lbs, 7 oz., a perfect little bundle of joy. I was told he had a low APGAR, but that he would be fine; since he was full term, he did not have to go to NICU. He looked and acted like a normal new born baby. His journey would just continue as normal. Such a sense of relief.
I think sometimes when one has a baby, even if it is not the first, one can tend to look past the subtle signs that something may not be just right. Those signs did not become clear until Jacob was about 6 months old. At a routine checkup, the doctor mentioned that Jacob was not meeting his milestones. His growth percentiles were below normal. The doctor asked me why Jacob only had a mitten on his right hand to keep from scratching, and if Jacob used both hands. Of course he does. I think he does. Why wouldn’t he?
As I began to watch this more closely, I realized I was wrong. He did not use his left hand. He kept it in a closed fist most of the time with his thumb tucked tightly inside. His left elbow was slightly bent so that his arm tucked against his chest. Now that I looked closely, his left leg didn’t move the same as the right either. As most moms would do in this day, I searched Google. Google can be a scary place. Words jumped off the screen at me: Cerebral Palsy, Spastic Hemiparesis, Hemiplegia, and Stroke. No! My baby does not have any of these. I will just make sure he uses that hand more and it will be OK. As time went on, it became anything but OK. I realized Jacob’s journey might be changing from normal.
Since Jacob was not meeting his milestones he was referred to physical therapy and then later occupational therapy. Depending on the results of therapy, Jacob’s pediatrician would determine the next step. Scary at first, therapy over time became an amazing place filled with triumph at the tiniest progress. Therapy was effective, but not sufficient. Jacob was fitted with tiny hand and leg braces and was referred to a neurologist. I made the appointment, but remained somewhat in denial. This still could be fixed.
January 2015. Before Jacob’s first neurologist appointment, I had researched as much as I could and prepared myself for all the possibilities, at least I thought I had. Within 45 minutes, all my fears were validated.
Diagnosis: Left Spastic Hemiparesis, Cerebral Palsy and Microcephaly likely caused by a stroke at or before birth.
I felt like my world was ending, I still held hope that maybe it wasn’t a totally correct diagnosis. As silly as it sounds now, I believed the neurologist could be wrong. Jacob was referred for an MRI to confirm the diagnosis.
April 2015. The MRI was scheduled. In April, we took the long trip to Children’s Hospital in Little Rock for a sedated MRI. It is a little disconcerting to have your baby sedated for a test, but there was little choice. Weeks later the scan was in. Jacob’s diagnosis was confirmed. It was not what I wanted to hear. Jacob had suffered a stroke in the right MCA territory of his brain. This means the stroke caused the left side of his body to be partially paralyzed and resulting in Cerebral Palsy and Microcephaly. The journey had taken such a drastic turn.
I entered a mourning period–I mourned for the loss of the healthy child I should have had; I mourned for the pain he would have to endure; I mourned for the fact that his childhood would be filled with doctors, therapy and many braces; I mourned for the school events he would likely miss because of his disability. After some time the joy resurfaced. I am happy because I have a beautiful little boy who has an infectious smile, eyes that sparkle with mischievousness, and happiness about him like many children will never experience. I have a child who has no fear and knows no bounds; I have a child who does not realize he has a disability as he plays with his siblings and as he approaches each day full of energy ready to accomplish something new.
Jacob is now 19 months old and is learning to take steps. Those who know Jacob will tell you that, not only will he walk, he will be running everywhere because he has no fear and the only boundaries in his mind are those placed upon him. They also say that he is so determined that he will do whatever he sets his mind to do. This gives me hope.
My hopes for Jacob are not like the hopes of most mothers. I hope that my child will walk before he is 2. I hope my child will talk, ever. I hope that my child will clap his hands together. I hope my child will dress himself independently, ever. I hope my child will go to school in a normal classroom and be able to learn in a normal class setting. I hope my child will wear the same size shoes on each foot. I hope Jacob never sees his disability as a confinement and never gives up becoming the person he wants to be as his journey continues.
Sadly, there is not much awareness of pediatric stroke. I certainly never knew about it before I experienced it through Jacob nor did I know it happens as much as it does. I certainly did not know all of the possible effects on a child. It is my hope now that the story of Jacob’s journey will be shared to bring an awareness of pediatric stroke and the possible serious affects it can have on children. Jacob is only one of thousands of survivors. Jacob is so fortunate that he is born into a family and extended family who loves and supports him beyond measure and will strive to help him become the very best that he can be.
I expect that Jacob will have a most interesting journey filled to capacity with goals and trials, twists and turns, overflowing with many rewards as he flashes his infectious smile all the way with a sparkle in his eyes.
In honor of World Stroke Day 2015, pediatric stroke advocacy organizations worldwide have joined together to create a campaign dedicated to supporting pediatric stroke awareness across the globe! Join us in making this campaign a success by sharing this information. The website is United4PediatricStroke.org Once on the Home page you will find three initiatives to take part in. You can BE VISIBLE by sharing your pediatric stroke story on the world map. You can BE HEARD by sharing the graphic on your social media sites. We have the graphic available in many languages making it a truly global initiative. You can UNITE FOR CHANGE by sharing any or all of the resources we have listed on the page. Let’s do this together and honor the children who have been impacted by stroke for World Stroke Day!
Here are the details:
If you have a pediatric stroke story to share put it on the World Map! Simply go to the BE VISIBLE page, share your child’s name, age at time of stroke, location in the world, brief story and a picture! If you are now an adult, but had a stroke at age 18 or younger, we want you to add your story as well. Let’s turn the world map purple!
Do you realize the impact that can be made if each person that were to take part in this campaign, shared on social media? We have made it easy for you to raise awareness with just a few clicks. Go to the BE HEARD page, select the graphic in your language and share it on any or all of the social media sites. Let your voice be HEARD for pediatric stroke. Use #united4pedstroke and share the website united4pediatricstroke.org for the greatest impact!
UNITE FOR CHANGE!
In honor of 2015 World Stroke Day, we want to ensure that the awareness and education grows for pediatric stroke. Whether you are a healthcare provider, an impacted family or someone just learning of the possibility of stroke among children, we encourage you to increase your knowledge of pediatric stroke. Go to the UNITE FOR CHANGE page and check out the resources for pediatric stroke. Please share any of these with your friends and family to educate them that strokes can happen to children, babies, teens, and even before birth. We can do so much more when we UNITE for CHANGE! Use #united4pedstroke and share the website united4pediatricstroke.org for the greatest impact!
Please make sure you share this information. We are United for Change for Pediatric Stroke! Thank you for your help in ensuring this global campaign is a success!
We love to support our fellow pediatric stroke foundations! In 2014 we donated to the annual pediatric stroke lecture series put on by Brendon’s Smile in collaboration with Washington University School of Medicine. The speaker for the 6th Annual lecture series was pediatric stroke expert Michael Rivikin, MD his lecture entitled “Neonatal Stroke: Progress and Promise” took place at Washington University of Medicine on March 16, 2015.
This lecture and the full pediatric stroke lecture series is available online for CME credit. Users would like CME credit, please register and login here https://cme-online.wustl.edu/. Then click on “Course Catalog”, then to “CME Credit Courses”, and next to “Pediatrics” to access the lecture.
To view the full lecture series please click here: http://neuro.wustl.edu/patientcare/clinicalservices/pediatricneurology/brendonssmilevideo/
Bellaflies is proud to be Making a Positive with Brendon’s Smile!!