News no parent wants to hear
BY JEM ANSHAW
Most people will associate suffering a stroke as something that happens to older people, but Kylie and Kris Facer have made it their mission to break this mindset after learning their newborn daughter had suffered one before she was born.
“Never once do you think you will hear the words ‘your baby has had a stroke’,” Mrs Facer recalled of the news delivered to her and husband Kris in September 2016.
At just 36-hours old Anika had a seizure during her first bath at the John Hunter Hospital in Newcastle. Following tests and scans doctors delivered the news that they believed she had suffered a stroke before birth.
While their story includes early diagnosis and prompt access to essential care, they found an obvious lack of support and information regarding paediatric stroke as they processed what they had been told.
“There was no one to pick up the phone to and say ‘what’s happened?’, ‘how does this work?’, ‘what are we going to do now?’. Nothing,” Mrs Facer said.
Through The Stroke Foundation Mrs Facer connected with Dee Banks, mother of Emma who had also suffered a stroke in utero and the duo founded Little Stroke Warriors.
Their initial focus was simply to build a support network for families to provide real life experiences and advice, but as the community grew it became clear more was needed.
Sharing their stories lead to the development of the My Family Stroke Journey info pack that will be rolled out to maternity hospitals nation-wide as an initial source of easily digested information at time of diagnosis.
In June Little Stroke Warriors achieved another major milestone with the announcement of $4 million of funding from the Federal Government and the National Heart Foundation for research into improved diagnosis of paediatric and childhood stroke.
“The funds will be for a study into providing kids with access to the clot busting and clot retrieval services that adults can access, and the biggest pivot point for that is time to diagnosis,” Mrs Facer said.
“If an adult has a stroke there are quite visible signs, when a bubby or even a young child has one, no one thinks that.
“It is not days, it’s not weeks, it could be months before diagnosis (for babies and children).”
Childhood stroke is something most people do not consider until they are faced with it, but it affects around 600 Australian families each year.
More information about the Little Stroke Warriors group can be found on their website, littlestrokewarriorsaustralia.wordpress.com or by following them on Facebook.