Stacey and her husband Anthony have three sons – Isaac, 7, Harry, 6 and Callum, 4. Callum lives with a number of diagnoses – he has low tone which causes him issues with swallowing, core strength and fine motors skills and also has laryngomalacia and tracheo-laryngomalacia, dysphagia and hyperphasia. He also had central apnoeas as a baby and was on home oxygen for about 18 months.
“When Callum was a baby he had a lot of trouble with breathing and would stop breathing suddenly,” Stacey recalls.
“He was always very hard to feed and he would always struggle to finish his bottle or it would take us an incredibly long time to do so.
“When he was 9 weeks old we discovered he was aspirating due to multiple issues but most predominantly due to his floppy airway which he then had surgery on to repair and a tube inserted for feeding.”
Stacey recalls the experience as scary and confronting.
“We knew there was something wrong but we really struggled to find help for him or someone to take us seriously,” she says.
“Once we met an amazing, understanding paediatrician, everything changed. We were admitted to hospital during our appointment and four days later he then had airway surgery.
“We went on to have multiple surgeries and investigations to try and find answers. All up we spent the first 6 months’ of Callum’s life in hospital.
“When we came home, it was an adjustment for the whole family. We had to find a new routine and a way to explain to our boys that Callum will have his tube for quite some time.
“We eventually found our groove and adjusted our lives and the rest is history.”
Stacey is making history of her own – she recently won the AusMumpreneur Handmade Business Award for her business Tubie Fun, which she started in 2017 following a hospital admission.
“We had just come home from another scary, long hospital admission in which Callum had complications from having his feeding tube placed.
“Every night I would research his symptoms and try and find a diagnosis for him. Eventually, I knew I just needed a break and so I decided to sew some button pads (to cover the feeding tube) to help take my mind of things.
“Eventually friends asked me to make them and then others did as well. I thought if I helped a few people I’d try and help a few more.”
Stacey’s online store now sells a range of colourful hand-made kids products to support their feeding journey.
“We are very lucky to have such a supportive community who love our products. I now work almost every day to try and fulfil orders as quickly as possible.
“I think there is something about people buying from someone who also understands what this special needs journey really is like.”
Stacey says that the hardest part about tube feeding is inclusion.
“A lot of people don’t understand the process of feeding or think it can have limitations on what he can and can’t do. I think it scares a lot of people as well as they just don’t see it around.
“Most people have no idea Callum has a feeding tube until it needs to be used as it’s mostly hidden under his clothes. His party trick is to run around lifting his shirt up to show people and most people are either terrified or happy to ask him all about it.
“Everyone who is tube fed deserves to feel just as special as everyone else. I’d love to have more inclusion surrounding tube feeding. Fed is definitely best, no matter what it looks like.”
Article as appeared in the Source Kids Magazine