Making our moves count the November

By Dee

My family is doing Stride4Stroke in November to acknowledge and celebrate the hundreds of babies and children impacted by stroke each year.

Raising money and awareness of childhood stroke is deeply personal to me, as my precious seven-year-old daughter, Emma had a stroke in utero.

We didn’t know Emma had had a stroke until she was missing milestones at nine months. Before then we were blissfully unaware as first-time parents.

I noticed Emma would prefer her left-hand. She would eat finger food with her left-hand but her right-hand and arm had dropped. When we played on the floor she didn’t grasp or reach with it, she didn’t lift her knees at all and while babies in my mother’s group were crawling or about to crawl, little Emma wasn’t even close. It was the gut feeling, the maternal instinct that drove me to make an appointment and have her checked out, just to be sure.

Our maternal child health nurse saw Emma and noticed the lack of strength in her right side. ‘Don’t worry’ she said, ‘it’s probably just a strength issue, nothing a bit of physio won’t fix’.

While sitting in the waiting room for the physio, I remember seeing mums with kids who had children with mild to severe disabilities and thinking to myself, “wow that must be tough”. The mum’s faces were full of hope, love and pure exhaustion. I never ever thought I would be that mum.

From the physio we saw a paediatrician, then a second paediatrician, and then a neurosurgeon. The neurosurgeon confirmed Emma had suffered a stroke in utero and as such a very large cyst or cavity had formed in her brain. My beautiful baby had a brain injury. The area of the brain damaged was the part that controlled movement on Emma’s right side and her speech.

This tiny precious brain with this huge mass, I remember looking at her and thinking how are you alive? How does a child survive such brain damage? How could this happen to my sweet Emma?

Doctors told me if Emma’s brain injury had shown up on any of my prenatal scans, I would have been advised she was incompatible with life, I would have been advised to terminate the pregnancy.

What a thing to say to a mum, and very much underestimated the fierce determination of my daughter.

Now, Emma is at school; she loves ballet and has many friends. Her teachers tell me that she is an old wise soul. Emma has global hemiplegia, sensory and speech issues – and she is the most kind, clever, compassionate and cheeky child. We are immensely proud.

So, in celebration of Emma’s love for ballet, we’re going to dance our way through November – cause that’s how we roll.