A Love Like No Other
A craic-loving couple are shouting their daughter’s worth and showing the world how much fun can be had by a tube-feeding family. Introducing Brana Gadsby, Ross Worth and their beautiful Evie.
Brana and Ross were not expecting to be able to celebrate their daughter Evie’s first birthday. During Brana’s pregnancy, a scan revealed their baby had serious heart issues, leaving the first-time parents with a dire prognosis. Speaking from their home on the west coast of Ireland, just days before Evie turns one, the pair admit they are “very emotional”.
“It’s amazing to see her so well on her first birthday,” Brana says, nestled with Ross while bouncing a distractingly cute Evie on her lap. “It’s better than we could have ever imagined.’
Brana is a nurse and had guessed that Evie, who has Down syndrome, might have trouble feeding. She and Ross were warned their baby would likely experience heart failure at six weeks old – which she did. An NG (nasogastric) tube was placed soon after.
“There was a lot of relief for us when the tube went in. We were in a constant cycle of trying to get her to feed or trying to get her to sleep,” says Ross, turning to Evie. “Which was sad, because you wanted to do things other than just sleeping and feeding. When the tube went in it was much easier for us and she could actually just enjoy being a baby.”
“And that was the main thing for us,” says Brana. “We didn’t know how long we would have with her. So enjoying that time with her and interacting with her was so important.”
Evie’s first year has been full of adventures. Beachcombing and mountain-climbing near home, and road-tripping to Scotland in the Volkswagen Crafter her parents converted into a cosy campervan.
Her first sojourn in this van saw Brana and Ross accidentally melting her milk bottles (“we thought sterilisation required steaming”) but the pair have since mastered tube-feeding on the go – opting for gravity feeds over a pump (“a pump is just extra gear”) and keeping elastic bands handy for hanging syringes.
Evie now eats a range of meals orally – despite a false start on the solid food. “I was really excited when she turned six months old because I was like, great, now we can begin solids,” says Brana. “That lasted about two weeks before she started getting stressed out. Then I got really stressed out. It just wasn’t working.”
Evie’s development is behind that of her typically-developing peers. “So for her to start weaning at six months was probably too soon – even though she was interested in the food that we were eating,” says Brana.
Evie took a break from the solids and tried again a few months later. “I was like, you lead us, because it stressed me out so much and I was getting really, really bummed out about it,” says Brana. “Now her eating is going really well and I think it’s because we followed her lead. There isn’t a timeline for people who don’t fit the ‘normal’ criteria, so you need to be really clued into your child and not pressured from the outside.”
Nowadays Evie enjoys a mix of solids supplemented by formula tube-feeds. Her NG tube has, for the most part, stayed in place.
“I rolled over in bed and whipped it out once by accident!” says Brana. “But Evie really isn’t grabby. I’ve also learnt to tape very close to the nostril because she would get her little finger in and flick it out.”
Brana’s the expert on taping, as was made clear when she got Covid and Ross – a software engineer – stepped in and fashioned a web of tape across Evie’s face. The family shares such shenanigans on their YouTube vlog and Instagram account.
While the love Brana and Ross have for each other and their daughter radiates, heartwarmingly, through their videos and posts, fellow tube-feeding parents might wonder, amid Evie’s many medical needs, how do they sustain their relationship?
“We communicate all the time,” says Brana. “We never stop talking to each other. It could be about a random thing that pops into our head, or it could be something more deep than that. And timing doesn’t matter. If something’s on our mind, we’ll just shout it out.”
“We’re also very conscious of showing how much we love each other,” says Ross. ‘Sometimes things do get stressful or hard and if we get snappy, we’re quick to recognise it in ourselves and apologise for it. Even before Evie was here, when we first got together we recognised how much of a good team we make. We’re always on each other’s side.”
Like many of us whose children are not following typical paths, Brana and Ross often find people telling them things like, “I couldn’t do what you do”.
“But you could,” says Ross, offering some words of advice to parents who are new to tube-feeding. “You’re going to love this child more than anything, and you are going to do whatever you can so that they’re comfortable and they’re happy.”
“We didn’t wake up here with tubes and wires and machines and equipment and appointments – we were led into this,” adds Brana. “We didn’t choose to be in this position, but we’re over the moon that we are here.”
By the time this story goes to print, Evie will have welcomed a sister who may well not need to tube-feed.
“I’m so excited about breastfeeding, because I really enjoyed that while it lasted with Evie,” says Brana. “I’m trying not to big it up too much just in case it doesn’t happen – breastfeeding is not always an easy journey, I know that – but I love the idea of just whipping your boob out and feeding your baby.”
Ross is also looking forward to the convenience of potentially straight- forward bottle-feeding, but thinks having a baby who isn’t Evie “will just be weird”.
“I am excited for it, but when I’m holding other babies they’re so wriggly and constantly doing things, whereas Evie’s so gentle and chilled out. She’s so lovely and I just love her so much.”
Followers of the family will know that Ross and Brana own three almost identical dogs – all border-collie crosses. “They look the same, they act mostly the same, and I just want that with my kids too,” laughs Ross, smiling at Evie. “I want them all to be the same, you’re great.”