Raising A Child After A Perinatal Stroke
The First Signs Something Was Wrong
When my daughter Olive was born, everything seemed fine at first. She cried a lot in those first few hours, something I brushed off at the time, though in hindsight it makes sense. Once we brought her home, we assumed all was well. But just three days later, our world flipped upside down.
Subtle but Alarming Seizures
Olive began having seizures on her third day of life. At first, they were so subtle I almost dismissed them, unsure if it was just normal newborn behavior. In fact, they may have started earlier, but we hadn’t recognized them yet. They were short and quiet, not at all what most people picture when they think of a seizure. Every baby presents differently, and in those early days, it was pure mom instinct that told me something wasn’t right. By the middle of the night, the episodes were happening more often and it became clear she was having seizures. We filmed them to show the doctors, and that turned out to be very helpful. If you ever have concerns about your child, I highly recommend documenting what you see, especially on video.
A Snowstorm Drive to Denver
By 4 a.m., we were on our way to the hospital, driving through one of the worst snowstorms I can remember. We live two hours from Denver, and that drive was one of the most stressful of our lives. Thankfully, we made it safely to Children’s Hospital in Denver.
Hearing the Diagnosis
At Children’s Hospital, we finally heard the words that made my heart sink: Olive had suffered a perinatal stroke. At the time, I didn’t even know that was possible. Thankfully, the neurologist was there to answer all of our questions in detail. No one could say exactly when it happened. Maybe days before birth, maybe during delivery, but the damage was clear. The stroke had affected a large portion of her left hemisphere. The doctors reassured us she would be okay, though they couldn’t predict how her development might unfold. We were told there was a possibility of CP, developmental delays, epilepsy, and more.
Searching for Stories
In those first days, all I wanted was to hear from other moms. Stories of babies who had strokes and still grew up healthy and happy. I did what every worried mom does: I Googled. And, of course, it was the very first thing the neurologist told me not to do. But I needed more information. I call myself a “professional Googler,” yet even with hours of searching, I couldn’t find what I was looking for. There were studies and medical articles, but very few real stories from other moms. Nothing that showed me what life might actually look like.
That’s why I’m writing this series: for the mom who’s up late at night, scrolling and searching for hope. For the family just beginning this journey. Because it can turn out beautifully. Every child’s path is different, but children’s brains have an incredible capacity to heal. Sometimes you’d never even know a stroke happened.
Life in the NICU
In the NICU, Olive’s seizures stopped after the first full day there. We were told that was a good sign. We stayed nearly a week with endless tests, monitors blinking, hundreds of wires attached to her tiny head, learning a whole new language of medical terms. The staff at Children’s Hospital was extraordinary. Their attention to detail was comforting, their care and kindness overwhelming. The constant check-ins, meetings with different departments, long discussions with the neurologist, and a clear plan for the future gave us something solid to hold on to.
When we were finally discharged, I felt both relief and fear. Relief that Olive was stable and could continue growing into, hopefully, a healthy child. Fear of the unknown and all the “what ifs” that still lingered. We chose optimism, because in a situation like that, it’s the only choice you have. Anything else will drive you mad.
Feeding Struggles and Nutrition Focus
The months that followed brought their own challenges. We noticed her right side was weaker, especially her hand and arm, but the biggest challenge was with her feeding. Her mouth muscles were too weak to properly latch for breastfeeding, and looking back, I think she may have had tongue and lip ties we never addressed as well. Breastfeeding was a constant struggle. It was stressful, painful, and filled with tears on both sides. After months of trying (with lots of bottle feeding too), I finally stopped. I pumped for six months, but once I returned to work, my supply dropped and I let it go for the sake of my own mental health. It’s not a season I look back on with fondness.
From the beginning, we supplemented with formula because I never made enough milk. I bought it from Switzerland, determined to give her the cleanest ingredients possible to support her healing brain. When she started solids, I obsessed over nutrient-dense foods: egg yolks, liver, avocado, cod liver oil… anything I thought might help her healing brain. I truly believe nutrition was part of why Olive did so well in her recovery.
Early Intervention and Progress
We also started early intervention therapies- PT, OT, and speech through services offered for free by our county. Because Olive was born in February, just before COVID hit, many of the sessions ended up being virtual. Still, the therapists gave us strategies and exercises to do at home, and we saw real progress. After six months, we tried “constraint therapy,” gently restraining her stronger left arm for short bursts to encourage her to use her right side more often. She didn’t like it, but it did help. She wore a little hand splint too for portions of the day, which helped open her tight fist and stretch her thumb muscle into a proper position.
Those first nine months were exhausting and overwhelming, but they also marked the beginning of Olive’s resilience. Even when her future was clouded with unknowns, she showed us daily that healing was possible. She wasn’t going to let a diagnosis slow her down and she ended up hitting all of her milestones right on time, if not a little early.
A New Perspective on Labels
Looking back now, with everything I’ve learned from Dr. Amy Johnson and The 3 Principles, I see labels like Olive’s differently. A diagnosis is just a word. By itself, it has no meaning. The suffering comes from the story we build around it and the thoughts about what it might mean for our future.
Babies don’t do that. At nine months old, Olive had no idea she was “different.” She didn’t sit in worry about her weaker side or wonder how it might affect her life. She simply lived, rolling, crawling, playing, growing in her own way and her own time. Without the burden of thought, she naturally did what kids do: she thrived.
Lessons in Resilience
That perspective has changed the way I see everything from illness to diagnoses like depression, anxiety, or even cancer. The label itself is neutral. It’s what we pile on top of it with our thinking that makes it heavy. Olive’s story is a reminder of what’s possible when we don’t get caught in those thoughts.
This was only the beginning. The months and years ahead had their challenges, but Olive made it clear that she was going to live a beautifully active and healthy life, and that there was no need to worry.
Chapter Two continues that story.
