Squad Goals
How one family built a team of support around their tube-feeding son.
The eldest of Sarah and Stuart Chignell’s five children is Eadweard, a cheeky teen who, due to his extremely rare genetic condition, has been tube-feeding since he was a toddler. He uses a MIC-KEY G-tube button, feeds with both formula and blended food and, according to his mum, is quite the mischievous trickster.
“When you see Eadweard laughing hysterically, you know he’s done something to get a response,” says Sarah from their family home in Bendigo, Victoria.
“Although he has very little in the way of communication and motor skills, he’s learned how to fiddle with his feeding tube to disconnect it from the pump. He’ll roll in just the right way so that the tube goes behind his back, so if you only glance into his room, you can’t actually see the big puddle of formula he’s made!”
As one of only nine known people in the world living with infantile SCN1A encephalopathy, Eadweard’s support needs are constant and complex. So much so that in the early years of his life, as Eadweard’s only carers, his parents were struggling to cope.
“We once had six hospital admissions in a week,” recalls Eadweard’s dad, Stuart. “It was just exhausting and, for a long time, we weren’t able to get support because the services around us took one look at what was involved and ran away.”
It wasn’t until Australia’s National Disability Insurance Scheme (NDIS) rolled out that Eadweard’s family could access professional support. But even then, there were limitations.
“Once, when Eadweard was in hospital having a seizure, a paediatrician told me he wasn’t sure that Eadweard would make it through,” says Sarah.
“I called the traditional support agency we were working with and asked if a support worker could collect Eadweard’s formula from home, because it wasn’t stocked by the hospital, but they said this wasn’t within their policy. They said the support worker could be with Eadweard while I collected the formula, but I wasn’t going to leave my child when there was a chance he might pass away.”
Fortunately, Eadweard’s health has since improved – and so has his support system. By directly employing support workers through Carer Solutions, the Chignells have full control of Eadweard’s team.
“We now have the flexibility to have conversations with our support workers and work out how they can help make life that little bit easier – and think outside the box on how to do that,” says Sarah.
“I can train Eadweard’s support workers and say, ‘this is what we would like you to do’. And when it comes to his nutrition, there are no legal requirements. There’s no legislation saying you have to have a professional giving support workers tube-feeding training or that parents aren’t allowed to teach it. There’s no red tape around it – it’s all down to parental or client choice.”
Eadweard now has a team of five support workers, all expertly meeting his daily needs. “Generally, our support team is better than us at doing Eadweard’s tube-feeding,’ says Stuart. ‘They make sure the tube is connected before they turn the pump on!”
One of Eadweard’s support workers, Katherine, has even found a fix for his trick of disconnecting his tube. ‘Instead of running it around his waist and then out to the pump, we thread it out of the top of his shirt sleeve,’ says Sarah. “He hasn’t discovered a workaround for this yet, but he’s got plenty of other tricks, believe me.”
Meet a member of Eadweard’s Carer Solutions support team, Katherine
“Working with Eadweard has taught me that tube-feeding is not as daunting as it seems. A feeding tube is not as fragile as people might think. You can handle it without it coming out, and moving it around doesn’t hurt Eadweard, either.
“When Eadweard starts laughing, you know he’s done something he shouldn’t have. He’s so cheeky – that’s just him – and he gets the biggest joy out of causing inconvenience! I don’t think a lot of doctors give kids like Eadweard enough credit. It’s been mind blowing to learn his level of comprehension, because he’s very, very switched on.
“I absolutely love working with Eadweard. I do feel sorry that he has struggles, but he doesn’t seem to let them get to him. He’s just such a happy boy and it’s a joy to work with him.”
This story was made in partnership with Carer Solutions. Find out about their unique Direct Employ service by giving their friendly team a call on 1300 729 839.