He lay there in the Intensive Care Unit, tubes and needles and machinery seemingly growing out of each inch of his body. With every beep of the alarm, every nurse’s frantic rush to his side to check his vitals, my chest tightened, my stomach twisted, and a piece of my heart died in much the same way I expected him to die at any moment.
He was suffering from apnea, his primitive brain unable to tell his body to breathe on its own. The seemingly harmless lip smacking and blinking I observed him engaging in weren’t harmless at all. They were seizures. Barely noticeable seizures, but potentially deadly ones. Cruel tics and movements that acted as an hourly reminder of just how unpredictable and unforgiving and fleeting life can be.
He would never use the right side of his body in the same way again, the doctors said. He would have difficulty with language, they continued. His brain would have to rewire — have to relearn all it had initially been programmed to do. His condition would necessitate hours upon hours of intensive physical, occupational, and speech therapy to function. He would be a candidate for lifelong epilepsy and would need daily sedatives in an effort to keep the seizure activity under control. He would require indefinite assistance with the most basic of tasks: getting dressed, putting on his shoes, and using the bathroom. And all this assuming he actually survived, of course.
He had had a stroke that took from him nearly the entire left hemisphere of his brain. And he was only 24 hours old.
I was in shock, the pain from my traumatic c-section mixing with my heartbreak to form a cocktail of hot, raging grief and despair. Surely there had been some sort of mistake, I thought. Strokes were things that happened to old people, not to newborn babies, and certainly not to babies still in their mothers’ wombs.
There had been no mistake. My baby had suffered a stroke sometime within the last seven days of gestation, possibly even during his complicated birth. And he was not alone.
In the months and years following my son’s diagnosis and subsequent addition of cerebral palsy and hemiparesis to his long list of medical labels, I learned the following about pediatric stroke:
- Strokes occur at the highest rate in infants who are younger than 1 month old — about 1 in 4,000 live births
- For children 1 to 18, strokes occur in 11 out of 100,000 children
- Stroke is one of the top 10 causes of death in children
- In utero and infant stroke survivors are 10 percent more likely to have another stroke before the age of 5
- Infant and childhood stroke can result in cerebral palsy, ranging in severity from foot dropping to requiring a wheelchair
- The medical costs required for pediatric stroke survivors can devastate families
- Pediatric stroke survivors suffer from a wide range of ailments, including physical limitations, cognitive problems, behavior and learning disorders, and bullying because of their reliance upon assistive devices, such as orthotics and walkers, and their inability to participate in many “normal” childhood activities
For a parent, this news is crushing. I existed in a cloud of anxiety and depression for the better part of my son’s first year of life. I mothered him under a microscope, barely sleeping for fear he would cease to breathe on his own in the night and certain every cold hand or foot was a sign of another stroke instead of a result of the chilly weather.
Eventually, with the help of Children’s Hemiplegia and Stroke Association and the fellow parents of stroke survivors there, the fog of anguish lifted. I was able to center myself and move forward with optimism instead of pessimism. And each day, my 4-year-old stroke survivor pushes the bounds and limitations under which the doctors expected him to live, teaching us what it truly means to be courageous and grateful.
Though I’ve been spreading the word for four years now, there are still people out there completely shocked to learn that infant and childhood stroke is a thing — including doctors. I’m here to tell you that it is a thing, and I’m also here to tell you there is hope.
Concerned that your child or one whom you know may be a victim of stroke? Look out for these early symptoms, and contact a doctor who will listen right away. Early intervention is a child’s best shot at recuperation.
- In infants, there may be seizures, limited use of one side of the body, apnea, poor feeding, and/or early hand preference before 10 months of age
- In young children, there may be delays in gross motor development, tightness or restricted movement in legs and arms, and/or language delays
- In older children, symptoms may include seizures or sudden one-sided paralysis
Know that pediatric stroke is a very real and very serious infant and childhood occurrence. Also know that there are many wonderful medical professionals and specialists armed and ready to help children live full, rich, healthy lives after stroke.
For more information, and to connect with others living with pediatric stroke, visit Children’s Hemiplegia and Stroke Association. And help us spread the word that pediatric strokes are real in an effort to reach parents and children in need of assistance.
It may be someone’s best shot at life — in every sense of the word.
©2015 Lola Lolita as first published on Scary Mommy