Family gets a bigger hand for brave Albie
AS a “frequent flyer” to the Royal Children’s Hospital, Albie Moore is privy to perks of the life-saving variety.
His parents now know every twist and turn in the road from their home in Geelong to Parkville; they’ve made that trip more than 100 times for their son’s appointments, procedures and major surgeries.
But many hands, provided through a new Australianfirst model of care, are making the load a little lighter for the Moore family.
Albie, 23 months old, was born with VACTERL association, a medical condition where each letter of its name stands for the system in the body affected, from the vertebrae to the limbs.
Already he has had surgeries to build a new lower bowel and repair his heart, but his health problems are ongoing, varied and complex.
In addition to any emergency issues, the toddler requires the expertise of 12 specialist teams.
The hardest parts for the Moore family have been scheduling his appointments to ensure they weren’t making daily visits to Melbourne and also knowing which medical specialist to call when a new issue emerged.
But at the RCH’s Complex Care Hub the family now have their own clinical nurse, Anne-Marie Wills, who is their “go to” at the hospital.
“It has made a huge difference to our family,” his mother Emma Moore said.
“Anne-Marie contacts the specialists to streamline our multiple appointments so we can minimise the time we spend in Melbourne and she attends most of them, so she understands Albie medically. I can call her later and ask questions.”
The hub, being launched today, includes nurses, social workers, physiotherapists, occupational therapists and dietitians.
It has helped return a sense of normalcy to their family life: their eldest son, Archie is attending kindergarten and Mrs Moore is working part-time.
And it means they can spend more time focusing on Albie, who is on the move and starting to make the ‘m sound’ for Mum, and less time on medical administration.
“We still don’t know what the future looks like for Albie, but we hope he will be as happy and healthy as he can be,” Mrs Moore said.