Isaac was just seven weeks into prep at the time of his stroke. Isaac was just starting to form little friendships with his classmates and was enjoying school. The day of Isaac’s stroke was just like any other. I dropped him off at school, just like I normally did. Little did we know that in a few hours our normal life would change forever.
That afternoon I went to pick Isaac up from school and found him surrounded by staff and paramedics, slipping in and out of consciousness, sticking his fingers in his ears and screaming. I had never been so terrified in my life. The ambulance officers didn’t know what had happened to Isaac. By the evening we had already been to two different hospitals and were no closer to finding out what was going on. We had been given a range of terrifying theories, from infection to a brain tumour. No one mentioned stroke.
By the time we were sent to the Royal Children’s Hospital in Melbourne later that evening, Isaac was extremely unwell. He was semi-conscious and highly sensitive to noise. Like any mother I would’ve done anything to trade places with him.
An MRI scan revealed a massive bleed in Isaac’s brain – he had suffered a stroke. I remember sitting on the hospital floor madly googling stroke, hoping to find the answers. But I struggled to find any information about childhood stroke, making me feel even more helpless and alone.
No one tells parents that stroke is something that can happen to a child. And while the vast majority of strokes happen to adults, paediatric stroke is not as rare as people may think. Every year around three to 13 children in every 100,000 will have a stroke. Strokes can occur in all age groups - from newborns to older teenagers, young adults to the elderly.
The effects of stroke are different for every child. Some children will recover completely but other children may be left with long-term difficulties including seizures, physical disability, speech or learning difficulties. My son is unfortunately among the child stroke survivors who will suffer life-long language and comprehension difficulties. He now as an Acquired Brain Injury.
Isaac’s neurosurgeon later told me the Arteriovenous Malformation (AVM) in my son’s brain had been bleeding slowly for weeks. When I think back to the lead up to Isaac’s stroke I can now clearly see it happening. In photos Isaac’s smile was lop-sided, his brow was heavy and his pupils dilated. Isaac’s personality had changed dramatically in the lead up to his stroke. He would chatter constantly, sometimes his speech nonsensical. He was irritable and aggressive with his teachers and peers. These might seem like small unrelated symptoms, but I knew something was wrong with Isaac. I just wish I’d known the cause. I took Isaac to a GP weeks before his stroke as I was so concerned, and although I was referred to a Paediatrician, Isaac wasn’t checked for any neurological symptoms – even though they were obvious.
Like adults, children also display the warning signs of stroke. Drooping faces, weakness or difficulty moving their arms, slurred speech, and headaches and dizziness, can all be precursors to a deadly stroke. I wish I had recognised these signs when they were right in front of my eyes.
Both Dominic and I are incredibly thankful Isaac is doing so well today. After his stroke we were told to expect the worst – that he may never walk or talk again. Looking at Isaac running around now, he has truly defied the odds. When Isaac was taken off life-support we were told he wouldn’t be able to understand or communicate with us. I could see the twinkle in my baby’s eyes and I knew he was still there. Again he defied the odds, developing his own form of sign language from the outset, determined not to be silenced.
Isaac has made incredible progress in his recovery and is a delightful little boy. From the outside it would be very hard to tell that Isaac is a stroke survivor. Isaac has what is commonly known in the stroke community as hidden disabilities and his stroke continues to impact his life. Although he is able to talk again and makes sense, he has ongoing difficulties with comprehension and speech. This is because Isaac now has a condition called Aphasia, both Expressive and Receptive. He suffers physical and debilitating mental fatigue, which makes school incredibly challenging. And like many child stroke survivors Isaac has spent a lot of time in hospital and rehabilitation instead of outside with his friends on the playground. Isaac will continue his rehabilitation for years to come.
Despite everything that’s happened to our son, we consider ourselves blessed. We know that too many parents don’t get to bring their child home from hospital after stroke. Tragically around the world stroke is currently one of the top ten causes of deaths in children. But it doesn’t have to stay that way. May is Paediatric Stroke Awareness Month, a time to stand up and help people understand that stroke happens to kids too. By sharing my story I don’t want to scare parents – I just want them to be aware of what a stroke is, how to recognise it and what to do if they think it is happening to their child. It might just save your child’s life.
To all mums of stroke survivors who everyday take on the fight for more support and awareness of childhood stroke – be brave, be fierce, be mighty.
Paediatric Stroke Awareness Month is an opportunity to acknowledge all child stroke survivors worldwide under the campaign Be Visible, be heard, unite for change. Visit the World Paediatric website and Facebook page to find out how you can get involved.
More information about stroke, childhood stroke and what support is available at www.strokefoundation.com.au.