Jaxson’s Story
Jaxson
This is Jaxson, he’s currently just shy of 4 years old and a pediatric stroke survivor. He had a left main cerebral artery stroke (left MCA stroke), that affected his right side. We don’t know exactly when his stroke happened, but based on the MRI he had at 7 days old, we know that it was within 2 weeks before labor to during or shortly after. We had a completely normal pregnancy, normal scans, mostly normal labor. The only hiccup in my labor was that due to a slow progression we had to end up going to a C-section.. none of it was emergency and there was no signs of my baby being in abnormal amounts of distress. My c section went smoothly and we went back to our room with a healthy baby boy, or so we thought.
Jaxson was 4 hours old when he started having some hypoglycemia, they were giving him sugar and breast milk and nothing seemed to be bringing it up. At 12 hours old they decided to take him to the NICU at 4am to give him IV sugars and get the blood sugar up. We had no idea the next time we saw him our world would be turned upside down.
4 hours later, my husband rolled me to the NICU in my wheelchair, we were stopped in the way in by a dr who “needed to talk to us before we saw our son”- my heart dropped.
We were informed that upon admission to the Nicu, one of the nurses started realizing that my son was having bouts of apnea and not breathing. Upon further intervention, they realize that he was having seizures.. not the ones you think of when you picture someone seizing out but baby seizures where he was lying there holding his breath, completely motionless.
They hooked them up to an EEG and realize he was having mini seizures every ten minutes. It took almost a week for them to get the seizures under control with a cocktail of medications. The next month was a blur.
Jaxson had to be able to breathe on his own before they could even do an MRI to see what had caused the seizures. We spent two weeks, not even knowing what was wrong with my baby.
When they finally were able to get him into an MRI they saw the damage.
I’ll never forget that phone call from the doctor calling to tell me that they needed to go over our MRI results with us. We rushed back to the hospital from dinner so fast. And when I walked in that room, the doctor had to sit down and he closed the door behind us I knew it wasn’t gonna be good… all I remember him saying is I’m so sorry, but your baby has suffered a stroke. I looked at him and I asked him what does that mean for his life for his future and all he could say to me was “only time will tell.”
I broke down sobbing. I don’t even remember anything else he said through that appointment. It sounded like the peanuts talking just “womp womp womp”
We spent three weeks in the Nicu with Jaxson. He had to learn to do everything, breath on his own, eat on his own. When he was finally released, we came home and had physical and occupational therapy appointments twice weekly.
Jaxson worked hard in therapy and achieved and overcame so very much. He was diagnosed with mild right cerebral palsy when he was 5 months old. While at the time, the diagnosis was heartbreaking. It opened so many doors for opportunity and resources for him.
Jaxson is currently almost 4 years old and meeting almost all milestones for a typical four-year-old. He will always have a harder life with extra hurdles but he is a SURVIVOR.
We unfortunately, we never know what caused Jaxson stroke, as one of the doctors told me in the first year of his life. It’s was just bad luck. That was so hard for me to accept at first, but it’s true, labor is the perfect storm, its is hard on a baby and on mom. Pediatric strokes are so much more common than we realize, however, a lot of children grow up to never have any complications due to the amazing plasticity of the developing brain.
I never even knew pediatric strokes were a thing until I experienced one in my own life. There’s not nearly enough resources or information out there about it and that’s why I’m so happy to be part of this nonprofit foundation.
