I’d like to introduce my son Isaac who is Six. To the outside world he appears like any other normal healthy child his age. Little would many know Isaac suffered a Haemorrhagic Stroke in March 2014. A bleed significant in size and located in the Left Temporal and Parietal lobes caused by an Arteriovenous Malformation (AVM).
Before the “event” in March 2014 we had noticed changes in Isaac’s behavior and speech for almost a year. Changes were subtle and at times we thought it was just Isaac being a normal five year old child.
During Kindergarten in 2013 we had him observed for assessment purposes. At the time we were advised we should seek a Paediatrician out so he could be further assessed as he was displaying “Aspergers or Autistic’ like behavior in the classroom. We didn’t agree with this view at all and opted at the time not to pursue this avenue.
In December 2013 Isaac’s behavior changed dramatically. He became very aggressive and there were lots of tantrums. At the time we put this down to his baby brother arriving.
Isaac commenced Prep in 2014. From day one he was having real problems and was not coping at all. He was not sleeping, hearing noises and seeing colours at night time and was having nightmares. Isaac started having imaginary friends. He became very aggressive at the end of each day and he tried to self harm. Obviously at this point in time we knew something was not right and he was taken to the GP. Ironically the GP never gave him any sort of physical exam and actually missed some very obvious neurological symptoms. We were told his behaviors where probably down to adjusting to having a new sibling and starting Prep. This didn’t sit well with me as Isaac’s behavior had become so extreme and he would talk incessantly. I was given a referral for a Paediatrician however sadly we never made it to the appointment.
Never did Isaac ever complain of a headache.
On the afternoon of 24 March 2014 Isaac had a seizure in the classroom. I went to collect him from school to be greeted by a number of staff and paramedics. Isaac was lying on the floor. He appeared to be sleeping however would intermittently rouse placing his fingers in his ears and screaming with pain. Sadly the paramedics attending did not recognise that Isaac had suffered a stroke nor did subsequent medical staff at two hospitals.
When we finally arrived at the Royal Children’s Hospital our dear Isaac was placed on life support. We were told he’d suffered a significant bleed. 8.5cm x 4.5 cm in fact caused by an Arteriovenous Malformation (AVM). It had been bleeding for some time and Isaac’s little body could no longer cope. My baby’s had a stroke – that happens to old people? An AVM – what on earth is an AVM? What were these people talking about!!
I remember feeling like it was all very surreal. It wasn’t happening and Isaac was going to just open his eyes and wake up. The prognosis at the time was not a positive one. As a Parent you feel so helpless watching your baby lay there hooked up to all these machines.
Within 48 hours Isaac was taken off Life Support and the long process of recovery was to start. When Isaac awoke he had Global Aphasia – he had no language at all. I was told to expect the worse and that he may not comprehend anything. I’m sure people thought I was completely bonkers but that little twinkle in his eyes was there. We found ways to communicate and within days Isaac had made up his own complex signing. He also started to say a few words.
We had many long weeks of rehabilitation as an inpatient and outpatient. Isaac was doing exceptionally well. In May 2014 we returned to hospital where Isaac underwent a several hour operation to re sect the AVM. It almost felt like we were starting all over again. Amazingly Isaac bounced back from surgery very quickly.
Several months on we are looking back and it all seems like a really bad dream. Isaac is happy and healthy. Physically he has recovered exceptionally well and has no physical deficits at all. We have the fatigue under control and Isaac is managing to cope so well. The “spiders in his brain are gone” as are the imaginary friends and he sleeps soundly every night. Whilst Isaac is communicating again he has expressive and receptive Aphasia. A very rare condition for a child of his age which presents its own challenges. We have a long road ahead of us. Recovery is slow. Every day is a new day – but each day brings new things.
We feel like we have our little boy back.
Life has changed forever. Mostly for Isaac as we face the challenge daily of him accessing the world around him.
More awareness is needed on Paediatric Stroke. Frighteningly several medically trained staff did not recognise Isaac had suffered a Stroke. Nor did they notice any neurological symptoms several weeks prior. The outcome could have been so different.
More resources are needed for Families and Carers with children who have suffered a Stroke and what it means to live with an Acquired Brain Injury. Everything it seems is targeted at Adults.
Emely Palmer, Isaac's mother