Amina Aden had a smooth fourth pregnancy. She gave birth to Butrudiin two weeks before his due date in 2008. His birth was complication free and he took straight to the breast.
But her newborn wouldn’t put on weight. That was the first warning sign her son was not well.
When he was three-months-old, Butrudiin developed a cold and became withdrawn.
“One day I noticed bubbles in his mouth, so I called my brother-in-law and he rushed us to the emergency department and they said he was low on oxygen,” Mrs Aden said.
“They took X-rays and they found two holes in his heart. That was the biggest shock of my whole life.”
Butrudiin had been born with a genetic chromosome disorder called trisomy 21, also known as Down syndrome, that causes developmental and intellectual delays.
“I went through four scans [during pregnancy] – I wasn’t told he had a problem, everything came back normal,” Mrs Aden said.
Butrudiin underwent major surgery, coming out of theatre with a feeding tube in his nose.
“I tried to bottle feed him but he couldn’t,” Mrs Aden said. So the tube stayed in.
At the time the family was living in New Zealand. Mrs Aden said hospital staff taught her how to change Butrudiin’s nose tube to save them from having to travel back and forth from their house.
When Butrudiin was about two-years-old, his feeding tube was changed to a gastrostomy tube, which provides a better feed.
When the family moved to Australia and settled in Tarneit, Mrs Aden was referred to a new program at Sunshine Hospital that helps wean children off tube feeding.
The specialised service is led by paediatrician and psychologist Lisa Barrow, dietician Tamara Sherry and speech pathologists Laura Kaplan and Adriana Vespucci.
Doctor Vespucci said Butrudiin was showing interest in food, but needed a push. So the team developed a plan to get him over the line, switching off his feeding tube at night. After almost six years of tube feeding, it took just under a month to teach him to eat safely.
“Now he can eat a chicken drumstick with his brothers, pasta with sauce or his favourite meal, steamed rice with spinach and vegies,” Mrs Aden said.
Without the clinic, she said weaning Butrudiin wouldn’t have been possible.
“I couldn’t have done it without them. Sometimes when you have a kid like Butrudiin and you don’t have someone to talk to, it’s really hard.”
