A Western Australian couple share their story about life on Home PN.
Mike, Clare, Elsie and Bertie Shaw live in the suburbs of Perth in Western Australia. Both Elsie and Bertie have been TPN (Total Parenteral Nutrition) dependant since birth, due to a rare condition that’s left them with complete intestinal failure and profoundly deaf.
Home Parenteral Nutrition has enabled Clare and Mike to administer their children’s nutrition themselves in the comfort of their own home.
“We can have the TPN in the house and administer it overnight,” says Clare.
“It’s so important for a family to stay a family and a unit; somewhere we have control of our own children.”
Clare describes part of the children’s nightly bed-time routine and the critical need to keep everything clean.
“Our night times consist of getting the TPN out of the fridge so it’s warm for when they go to bed. Then, setting up their trays always takes a while. You’ve got to make sure they’re completely clean and scrubbed up and we’re all washed hands and washed hands and washed hands again,” she says.
“They don’t know any different because it’s been part of their life since birth. They think when their little friends go to bed they get setup on their machine as well.”
Mike and Clare have found TPN dependence to be a subject not often talked about by those who aren’t affected by it.
“Most people aren’t aware of it. Some are surprised by the detail you have to go through, the procedures and how involved it is to ensure the kids stay healthy,” says Mike.
“It’s tiring. There’s alarms throughout the night. You sometimes feel like you’re never going to get to the point where you’re going to get a full night’s sleep,” adds Clare.
Even with everything life’s thrown at them, this incredibly strong family remain focused on the positives.
“We feel blessed that the children are still with us and they’re living very happy, ‘normal’ lives so to speak,” says Clare.
“Sometimes it breaks your heart seeing them go through everything they have to, but in general, they’re very happy so therefore we’re really happy.”