Each year up to 600 Australian children have a stroke, one in 20 die and more than half of survivors will experience long term impairments. With many families struggling to find information, guidance and support, the advocacy of families with lived experience has been vital. At 2021’s World Stroke Congress we met two mothers, Kylie Facer and Dee Banks, who are at the forefront of advocating for changes in the way children diagnosed with stroke are treated.
On 6 September 2016 my husband and I welcomed our little girl Anika. At 30 hours old Anika suffered a severe seizure and she was diagnosed as having had a stroke in utero which affected the bulk of the left hand side of her brain. She was lucky to be alive, we were devastated, terrified and confused.
In the days and months that followed we searched high and low for information. We wanted to know what her future might look like, what we needed to do for therapy and we wanted to speak with people who knew what we were going through. No one could help us with any of this. We felt adrift! We were handed a medical journal on prenatal ischemic stroke which was way out of our depth and we were told to take our baby home and just love her. Now along with fear, devastation and confusion, we felt angry.
In the months that followed Anika’s diagnosis we couldn’t settle to the idea that we were the only ones to be walking this path. I searched tirelessly trying to find another family that might be able to give me some guidance. After months of searching for information, support and understanding, I connected with Dee, whose daughter Emma had also suffered a stroke. After numerous conversations we agreed there must be more families like ours and in May 2017 we formed Little Stroke Warriors. Very quickly we started to find families across Australia and New Zealand and they all said the same thing – we need information, we need guidance and we need support. Our community now consists of over 800 families and is growing each day.
Knowing our voice was now supported by additional families we arranged a meeting with the Stroke Foundation. We wanted the national voice for stroke in Australia to hear our story, hear our concerns and hopefully they would help us address what we felt were massive shortfalls in the way children diagnosed with stroke were being treated. We wanted information which was reliable, accurate and accessible for our families, we wanted better pathways and access to services and treatments for our children.
Over the last four years we have achieved so much. One of the big ticket items on our initial wish list was an information resource for families at the time of diagnosis of stroke. This resource Our Family’s Stroke Journey was the culmination of the work of lived experience advocates from the Little Stroke Warrior community, research partners at the Royal Children’s Hospital Melbourne, an incredible team at the Stroke Foundation and many other parties that consulted on the project.
Emma was born at 41 weeks via emergency caesarean and at five months old I noticed a significant neglect of her right side. I took her to several health professionals and I was turned away. Eventually her maternal child health nurse raised the alarm at 10 months old. At the Royal Children's Hospital it was confirmed that Emma had a periventricular stroke of the left hemisphere that occurred in utero. Emma lives with triplegic cerebral palsy and developmental delay. Emma doesn’t let her diagnosis stop her thriving, she is currently attending school, loves to sing and dance and we are so thankful she is ours and she survived such a catastrophic health event.
The trauma of Emma’s diagnosis period has always lingered because of the complete lack of information about the path forward or even about childhood stroke. The trauma was taking her to doctors and being made to feel like paranoid first time parents because they lacked knowledge in childhood stroke, it was the complete isolation we felt after being told childhood stroke was rare. Had Emma been diagnosed sooner she would have had months of early intervention and had I known that stroke can happen to children I would have had the tools to advocate. The injustice of our experience and many others in our community has driven our passion for change.
We identified common themes and experiences in Our Little Stroke Community, including gaps in stroke care for children, late diagnosis, and poor pathways to recovery. We met with the Stroke Foundation and the Royal Children’s Hospital with a view to collaboration, understanding that we were each experts and together we could close the gaps in the healthcare system, as well as platform the childhood stroke cause in Australia. We had a shared determination to drive change and ensure children now and in future received the best care possible, that it would be simply unheard of that it would take days, weeks or months for a child to receive diagnosis of stroke. While lived experience has been crucial in our collaborations, it was equally important that we had the support of the Stroke Foundation and our leading childhood stroke expert A/Professor Mark Mackey. Our success has been a brilliant example of what can be achieved when organisations work together collaboratively with shared goals.
Another major achievement is the awarding of AUS $4 million from the Medical Research Futures Fund for the Paediatric Acute Code Stroke study (PACS). The Stroke Foundation has partnered with Murdoch Children’s Research Institute, researchers, health professionals, industry and patients to transform the care of children with stroke by dramatically decreasing time to diagnosis and increasing the number of children receiving reperfusion therapies. The clinicians leading this research are Paediatric Neurologist and Stroke Expert Mark Mackay and Stroke Unit Nurse Consultant Belinda Stojanovski. The lived experience consultation group will be crucial in this study.
The power of lived experience
We encourage all organisations, health professionals and medical researchers to consider consultation with survivors as crucial to improving stroke care. People with lived experience are the experts in their own lives and should have the opportunity to play an active role in decision making, strategic planning and research. Involving people with direct experience will dramatically increase the chances of solutions and strategies having deeper resonance and impact. You can teach many skills, but you can’t teach lived experience. We, along with our Little Stroke Warriors community, have demonstrated the power of lived experience. Childhood stroke in Australia is no longer considered rare, it is now a priority focus in health care, research and with our government. Families now have the resources to navigate their path forward and with our strong partnership with the Stroke Foundation we will continue to work hard to bridge the gaps in health, education and the wider community.
Lived experience of stroke blog series: