The Ultimate Connector
When Sarah Gray’s toddler was diagnosed with a chronic inflammatory condition and later began tube-feeding, the Sunshine Coast-based mother felt entirely alone. But rather than wallow and whine, she rescued herself – and created a community for countless families like hers.
From four months of age, when my daughter, Bella, was failing to thrive, doctors started talking about the possibility of a feeding tube. At 18 months old we discovered she had eosinophilic oesophagitis (EoE) but she was still able to drink elemental formula, which meant we endured a very long decision- making process.
It’s really hard to make the decision to get a tube when a child is capable of drinking. Bella would say, “no, I’ll drink more Mummy. Don’t do it”.
It wasn’t until age seven that Bella, herself, contributed to that decision. I remember watching a 60 Minutes story about a girl who was dying from cancer. Bella came into the room and saw it and she said, ‘Mummy, I look like her. Am I dying?’. As a mother, it’s a heartbreaking thing to hear your child say. I think at that moment she realized how sick she was and she said she wanted to get the feeding tube that we had long talked about. It was such a relief, like a huge weight had finally been lifted.
We let her dietitian and medical team know and everyone agreed it was the best thing to do. I only wish we’d come to that decision sooner. We had really struggled for many years because Bella was always a question mark. Will she tube-feed? No, she’s doing OK. We’ll keep plodding along. I remember I’d have to push her around in the pram with her sister, Olivia, who’s two years younger. People thought they were twins, because they looked the same size.
Bella put on 8kg in the first year of having her feeding tube. She finally had energy. You don’t realise you don’t have energy until you have it. It was just remarkable the difference in her. And that made me regret even more not doing it sooner. That’s part of the reason why I started raising awareness, because jeez, we need to remove that stigma around tube-feeding – the misconception that it’s scary and something that’s not done at home.
By the time Bella got her gastrostomy tube, I had already founded ausEE Inc., a charity raising awareness for eosinophilic diseases and was volunteering, together with Mercedez Hinchcliff, whose son Henry has EoE and was also on an elemental formula. This meant I already knew a lot of people and families who had children on elemental formula and a few who were tube-feeding, which was fortunate because once Bella got that tube put in, we were pretty much on our own.
The hospital gave us 500ml bottles for Bella’s feeds and when the pump alarm would go off in the middle of the night, my husband and I would take turns getting up to make the next feed and switch it over. A year or two of this down the track, someone asked us, why don’t you use the litre bottles? We were like, they have litre bottles? It’s the little things like that that no one really tells you at the start.
When a fellow mum of a child who was tube-fed, Kate Anderson, started the Facebook group AU tubie support, I joined. Every February, during Feeding Tube Awareness Week (FTAW) we would share a bunch of American resources until eventually it dawned on us – hang on, we’re a whole country here, why can’t we be doing this? I contacted the Feeding Tube Awareness Foundation in America and asked if they would mind us launching a local FTAW campaign. They told us to go for it and so, from 2015 onwards, we’ve celebrated this week by informing and connecting Australia’s tube-feeding community.
I’m really proud about the virtual education program we put together for FTAW last year. This year, landmarks across Australia and New Zealand will be lit up in purple and blue to mark the occasion. We keep notching things up a little higher every year, with the goal of bringing more people together.
Bella built our feeding tube awareness website, which is full of resources and links to services and social networks. We also run virtual support groups which connect around 3000 people in the EoE and tube-feeding community. Bella no longer has her tube, but we like to think, once a tubie, always a tubie. Her EoE has been well managed for several years too, but that doesn’t stop us from wanting to help people.
If you are new to tube-feeding, don’t feel like you have to go through that alone. Find and connect with groups where you can share how you’re feeling. Talk to your family about it, too. Try not to hide like I did at first, when I was crying myself to sleep every night.
I saw a psychologist at the time, only once, as I didn’t connect with her because she didn’t want me to talk about what Bella was going through. She wanted me to talk about me and kept saying, but what about self-care? I get that, but at the time, I needed someone to talk to about what I was going through with Bella.
She was a bit abrupt with me when she said: “Well, surely you’re not the only one going through this. You’ve just got to find those other people and then talk to them about it.”
That was an epiphany moment for me. It felt like the Field of Dreams movie with Kevin Costner – if you build it, they will come! So I took long-service leave from my job, started the ausEE Inc. charity and other families did – as Kevin Costner promised – come.
I remember a supervisor I once worked with saying, ‘don’t bring me a problem unless you’re also bringing me a solution’. Well, this charity was my solution. Why was I complaining about there being no information out there for families like mine? Let’s make that solution! And 13 years later, here we are.