BENEFITING: CHILDREN'S HEMIPLEGIA AND STROKE ASSN.
EVENT DATE: May 01, 2014
My son Evan was born in January of 2007. He was full term and had no previous signs of health problems. His birth was actually a triumph, as his sister had been born via emergency c-section two years earlier, and Evan was born naturally and with no medication or intervention of any kind. Within seconds of his birth, however, it was clear that he needed assistance with his breathing, and he was admitted to the Special Care Nursery at Newton-Wellesley Hospital.
Within the next few hours, we learned that he had several different health issues occurring at once. He had a respiratory infection, an air pocket in one of his lungs, and a bacterial infection, among other issues. My first moments with him were scary, as I listened to him wheeze while being allowed to hold him for only a few seconds before he was whisked away to be stabilized, tested and monitored.
Luckily, things improved a lot for Evan in the next 24 hours. All of his health issues were being treated somewhat successfully, with a ways to go but a lot of hope. It was clear that he would need to be in special care for several days as they watched the infections, but that he was a strong little guy and most likely would have no problems. I spent most of that weekend sitting with him, but welcomed a little time with some friends that visited with me the day after he was born.
While we were visiting, we were interrupted by a doctor I was not yet familiar with, who then asked my friends to leave. He then explained to me that upstairs in special care, the nurses noticed Evan's eyes roll back into his head, and that his body convulsed immediately afterwards for several seconds. He had a seizure, and they were taking him to get an MRI as we spoke.
The MRI revealed that Evan had suffered 10-12 mini strokes - centimeter-long bleeds in both hemispheres of his brain. The doctors concluded that this would've occurred sometime between 24 hours before and 24 hours after his birth. The next several days meant several more types of tests, pokes, and prodding, starting with a spinal tap just an hour later. This stroke and seizure diagnosis itself would be the most concrete information that we would have for weeks or months to come. He was doing just fine after the seizure, as well as he had been before in special care, but there was no way of knowing what the long-term outcome of these mini-strokes would mean for Evan and his health for years to come.
It was apparent to me in those first days of getting to know my son that Evan was and would continue to be a strong little fighter. During what was a heartbreaking time, full of an array of questions that all had the same answer ("we just don't know"), Evan's spirit and pure determination were distinct and noticeable to anyone around him. He quietly communicated to me on several occasions that he was not giving up, and he told the doctors and nurses exactly what he thought of their tests as he fought them with an ever-increasing energetic force. I am amazed to this day at how much of his personality I got to see in those first days when he was physically so weak and frail.
The coming weeks and months were filled with doctor appointments and nervous nights. Evan's big sister Bridget was often in the shadows, and it was a constant effort for us all to remind her how special she still was to us, even though Evan was getting all of the focused attention from strangers. Our daily lives changed from what she and I previously had, this stay-at-home mom situation where we could be out, be at home, but mostly just enjoy time together, to hectic running out the door to appointments, meals on the go, searching for parking spaces in seemingly unending parking garages, and very little time for play. Bridget was a few months shy of two years old, and probably had the most abrupt lifestyle change of all of us during that time.
Within months, we learned how lucky we all were. Evan remained on anticonvulsant medication, and never had any additional seizure activity after that first weekend. Adding to the good news, his follow up MRIs showed that the bleeds healed completely on their own. "I don't know" was still the most common phrase used when we asked about his prognosis for long-term developmental effects, if this was likely to happen to him again, or why this even happened in the first place. Apparently this is one of the sad facts about pediatric and infant stroke: the medical community knows this happens, can treat symptoms to the best of their ability, and can pay as close attention as any of us can, but most of the answers that we have been searching for are still out there to be discovered.
Evan was followed by his regular pediatrician, his neurologist, his hematologist, the stroke clinic team at Massachusetts General, and an Early Intervention specialist. Our most lasting relationships were developed with the E.I. specialist, and the stroke clinic team. Our E.I. specialist came to our home once a week for almost two years to both work with him physically, and watch for any abnormalities. Bridget and Evan considered this time to be a fun playdate, and our specialist was kind enough to lend a supportive hand to me as well. The stroke clinic team is a pleasure to see. At this point, we see them just once a year as they will follow Evan as part of their research study. They will track his progress throughout his childhood, and are already extremely impressed that he has no developmental delays. They have been thorough with me with any information they come across that might help make sense of our situation, and have addressed all of my follow-up concerns and questions I had about having Evan’s little sister. I know that there are lots of pediatric stroke sufferers to study, and that they follow children with a wide array of abilities and disabilities. I have been comforted by the fact that anything they might learn from studying Evan might lead to a different answer for scared parents in those first days: "We know exactly why this happened. This is what we can do about it. This is what your child's future can look like." I would’ve loved to hear those words.
I have wanted to help raise awareness for pediatric stroke for the last seven years now, and have at times not been able to talk about my own experience with it, as the emotional gravity of it is so strong. I am reminded daily, in my everyday interactions with Evan, of how amazing it is that he can do the things he can do, and that at just a few days old, he had such a strong instinct to survive and show us what he's made of. I am privileged to be able to spend some of my time and resources during the month of May, Pediatric Stroke Awareness Month, talking with friends and strangers alike about anything from the simplest to most complex - anything from the mere fact that babies and kids can indeed have strokes, to the complexities of what that can do to a child, their childhood, and their parent's experience of it all. The first concrete thought that crossed my mind when I learned what Evan suffered was, "What? Babies can have strokes?" Evan has been teaching me every day since then what else kids can do.
For Pediatric Stroke Awareness Month this May, my family and I will streak purple in our hair to spark awareness of pediatric stroke. I also plan to share more stories about Evan, and how he brightens the lives of everyone around him. My hope is to not only raise awareness, so that the occurrence of pediatric stroke is no longer a surprise to many, but to also raise funds to go towards research efforts and other activities supported by Children's Hemiplegia and Stroke Association. The more we can learn, the better prepared we can be for other families of pediatric stroke survivors.