Sullivan entered the world in all his glory on the 4th of July 2018. His birth was less than perfect, ending in a code red C-section due to foetal distress but he had arrived and his Apgar scores were 7 & 8, not bad!
Sullivan was taken for a short stay in the NICU due to some slight respiratory issues, but was able to stay with us the very next morning. Safe to say, we were utterly smitten with him. His big brown eyes were a reflection of my own, while the rest of him was all his Dad. Sullivan had no issues feeding and despite the traumatic birth we were released, baby in tow, a short 2 days later.
Sullivan quickly settled in at home, and we quickly forgot what life was like without him.
When Sullivan was around three months old, I remember remarking to my Mum while watching him play under a play gym – “he’s going to be a left hander”. I had noticed that day that he was much more dominant with his left hand, always swatting and batting at toys with his left, while his right would stay mostly in a fist. A twinge of panic washed over me, not because I knew about Paediatric Stroke at that point, but mostly because I’m a bit of a worrier.
I decided I would keep an eye on his right hand, it wasn’t like he wasn’t moving it, there was just a clear preference. Days went by and I couldn’t shake the worried feeling, so I did what most people would never recommend, I took to Dr Google, and down the rabbit hole I went. I read numerous stories about children favouring one hand, only to wake up one day and magically start using the other overnight. I was sure this was what was going to happen with Sullivan, however, I also read stories about children suffering strokes.
Wait, what? Children, babies… have Strokes?
A week later when we saw there was no change, we decided that we should take Sully to the GP and raise our concerns. My GP assured me that Sullivan may just be left handed, and that he presented as a well-engaged, healthy, thriving little human, sending me on my way. I’d be lying if I told you that my concerns subsided.
Over the next few weeks I would visit 4 more doctors, to one, actually saying the words “I think my son has had a stroke”. At each one of those 4 visits, my concerns were dismissed. And so, as it does, life went on. Sully continued to grow and learn new things, but his right hand continued to stay in a fist.
At around 6 months old, while we were visiting family I noticed Sullivan make a weird movement. Kind of like a startle reflex babies have when they are newborn, except his eyes darted to the left. That familiar sense of panic washed over me again.
We didn’t see that movement for another two weeks, but when we did, I knew in that moment something was very wrong. As subtle as they were, we had an overwhelming urge to rush Sullivan to the Emergency Department of our local hospital. We were met with a relaxed vibe and were initially told by the Emergency Doctor that Sullivan was “playing around”.
We knew our baby, and he was not playing. He seemed distressed during the episodes which had quickly gone from lasting for a few seconds to lasting up to 5 minutes. The Emergency Doctor sent us home. Thinking back now, at the time we thought that would be the hardest night of our lives, but that was to come.
We made the decision the next day, after presenting at our local hospital again only to be sent home, to drive 2.5 hours to the closest Children’s hospital.
This was the best decision we have ever made. Hands Down.
Within 1 hour of presenting in emergency we were greeted by a whole Neurologist team who took our concerns extremely seriously. I mentioned Sullivan’s left hand preference and fumbled a sentence containing the word stroke and the Head neurologist assured me he would complete an MRI urgently for Sullivan. He explained that children under the age of 18 months should never have a hand preference.
While we waited for the MRI, Sullivan underwent an EEG test and was diagnosed with a rare type of seizure called Infantile Spasms. A catastrophic syndrome which if left untreated can cause irreversible brain damage, we then learnt that the scarring left from a Paediatric Stroke can sometimes cause this.
We knew deep down what the MRI would reveal, we just wanted to know so we could get our gorgeous boy the medical support he needed!
Sullivan was put under anaesthetic and taken from us so they could complete the MRI. We nervously went back to our little hospital room and awaited a call telling us he was in recovery.
After collecting a very groggy Sullivan from recovery we were greeted by the entire neurology team who asked us to follow them into a private room.
“Look, I want you to know that Sullivan is ok, but you’re about to be shocked by what you’re about to see” our Neurologist explained.
He then explained that Sullivan had survived a stroke.
Most likely between 30 weeks gestation and 6 weeks of age. Subsequently he was diagnosed with Right Side Hemiplegic Cerebral Palsy. A common outcome in children who survived a stroke. Our world changed that afternoon, irrevocably.
I remember feeling an odd sense of relief, we’d been advocating for our son for almost 4 months, knocking on doors, trying to find answers and we finally had them. Among that feeling of relief was devastation, confusion and the list goes on.
That night, I walked in on my partner Josh having a word with Sullivan. “You’re going to change the world” I heard Josh say.
That night after joining a few online Facebook support groups, a friendly face reached out to me. She explained there was a support group for Little Stroke Warriors. Kylie spoke to me that night until the wee hours. Telling me her own, as well as her daughters’ story, assuring me Sullivan will surprise us and that he is the same baby he was before his diagnosis.
We started on medication to control the seizures and began intensive therapy. We started working towards our own little goals, researching and connecting along the way.
We are still early on in our journey. Sullivan is about to turn 10 months but everyone who meets him is blown away by his resilience, his gentle heart and soul, his determination and cheeky grin. He has met each new milestone with such resolve and willingness.
We are so lucky we get to see Sullivan’s face every morning, to experience his firsts when they come. Lucky to be changed to the core by his diagnosis. Lucky that Life will never be the same, Lucky that we will never be more appreciative of the small things.
He truly is going to change the world, and we are so lucky to be living in his.