A little sumthin’ sumthin’ for Haemophilia Awareness Week 2018
We’ve had three years of Haemophilia management at our HTC at Westmead Children’s Hospital, NSW, working closely with our Haemophilia nurse Robyn who has become a wonderful friend and support to our family.
Sadly, we said our final goodbyes in July, 2018 before we embarked on a new journey and chapter to live in Stockholm, Sweden and learn to ‘do as the Swedes do’ with groovy ABBA music playing in the background.
Our son Elias was diagnosed as an eight-month-old baby with Haemophilia A Severe in 2015 and has since received factor ‘on demand’ intermittently back in Australia. In Sweden, treatment looks a little different whereby ‘primary prophylaxis’ is the method here for both prevention and treatment.
Upon our first visit to The Karolinska University Hospital here in Solna, Stockholm we learnt a few things. Firstly, there are several Haemophilia clinicians that regularly meet and make decisions for their patients based on group consensus. Children with Haemophilia receive a dedicated carer at pre-school, funded wholly by the local government, hence why the taxes are so high!
Incidentally, we learnt that the longest word in all of medical history is: Barnkoagulationsmottagningen. Did you get that? It’s the Swedish word for ‘children’s coagulation reception.’ Now that’s a mouthful!
Luckily, the kid loves köttbullar (meatballs)
Our family has started the process of learning how to give Elias factor intravenously, so not only is our Little Bleeder learning to get comfortable with needles, but he’s also how to speak and act like a Swede!
Until the next update, hej do!