Smashing It

Tube-feeding came as a shock to Eliana Joseph when her baby son, Luke, entered the world on a wave of uncertainties. But it didn’t take this unexpected advocate long to find her groove. Nowadays Luke is having his cake and (working on) eating it too.

You celebrated Luke’s first birthday with your own version of a ‘cake smash’ photo shoot. Cheers to that!

Luke had been nil-by-mouth for the majority of his life and we’d only just got the okay for him to have thickened purees safely, so I wanted to do something really special for him with a tubie twist. I popped up a post asking for ideas on the Feeding Tube Australia Facebook group and lots of people came back to me.

One woman suggested putting dyed yoghurt in Luke’s syringes – a great idea, because he likes to play with his syringes, too. Then I got a canvas and thought, we’ll do some painting and make it messy and he can just get it everywhere. I don’t care and it’ll look great!

I love how you make sure Luke doesn’t miss out on the fun stuff, even if it means getting creative or, I’m guessing, lugging around a bunch of tube-feeding kit.

Absolutely. I’ll meet up with some friends for a walk and they’ll see what I’ve got in my pram and actually apologise. Like, “I’m so sorry that we asked you”. And I’m like, why? If you don’t ask me, what am I going to do, stay at home all day? No thanks.

How did tube-feeding first come into your life?

It was quite a rude shock. I had my daughter, Leah, four years before Luke was born and she was completely fine. My birth with her was quite traumatic, however, so my biggest fear about having another one was having to go through the birth. The birth went great but as soon as he came out, he couldn’t breathe properly and that was where it all started.

Luke started to turn blue and then they took him off to the special care unit. They kept saying that they thought he had some kind of obstruction but they didn’t know what was going on. When he was first born they did try to put him on the boob and the poor thing just couldn’t even attempt it. He was tube-fed from the get-go and his NG (nasogastric) tube became a regular fixture.

Did you get an explanation as to why there were troubles?

The medical team discovered Luke has a floppy epiglottis which we were told would improve – and I believe it has, to a degree.

Later on we found out he couldn’t actually swallow. I thought he was going well with taking a bottle, but his first swallow study showed he was actually silently aspirating on everything.

That was a huge, upsetting shock because I thought he just needed a bit of practice on the bottle and then we could get rid of the tube and it would all be okay. But as hard as that moment was, it was actually a really good turning point for me. I accepted the tube. I accepted that it’s here and that it’s here to stay. That’s just the way it’s going to be and that’s okay.

Now we finally have a diagnosis for Luke – he has a genetic muscular condition affecting the TNNC2 gene. There are only five other people in the world who have it, Luke now being the sixth. There’s not a whole lot of information on it yet so we don’t know too much, but we’re so relieved to have an answer.

You’re pretty new to this and seem to have really found your stride. You’ve even kept your business going – The Handmade Baby Boutique. Am I right in thinking that, prior to Luke coming along, this only catered to your typical sort of parenthood experience?

Yes. So I’m a primary school teacher originally. When I had Leah I didn’t want to go back to work – I wanted to be at home with her – but I needed something else, so I created the boutique. I started off by making milestone cards that described what you go through in your first year with your ‘normal’ kid.

It’s interesting now, because I’ve been using a set with Luke and I’m thinking, we haven’t used that one, that one or that one. That one will come later and that’s okay. I made some tubie milestone cards with the help of some of the mums in the Feeding Tube Australia Facebook group and it’s been nice to be able to have a little pack just for Luke, to celebrate him.

I was scrolling through your Instagram account and found an old picture of a milestone card that says ‘perfection’ on it. How has your experience with Luke changed your view on parenthood?

He has changed me completely as a mother. But then, I still see him as completely perfect. At the start I was very much thinking, when is the tube going? When are we not doing this anymore? When is he going to be like Leah was? But now I know he’s not and I wouldn’t change him. I wouldn’t. And he has changed me so much.

I’m a very quiet person and avoid confrontation at all costs, but there was a point where we weren’t being heard by some of Luke’s specialists. And I told them off. It was such a huge thing for me – completely out of my comfort zone – but I thought, if I’m not going to do it, no one’s going to do it for him. He’s taught me to stand up, have some guts, and say something.

You become an advocate, don’t you? You don’t even know you have that in you and then suddenly, bam! And you’re raising awareness of tube-feeding with your social following, too.

A lot of people have said it’s nice for them to read what I’ve been posting because it makes them feel less alone. That gives me a lot of joy and a lot of comfort, knowing that I can help someone else, too. And I’ve actually made a really good friend through Instagram, who lives in Adelaide. I’ve never met her in person, but we chat almost every day. Her little boy is a couple of months older than Luke and they have so much in common.

How have you looked after yourself through all of this – have you done any therapy?

It’s funny actually because with my first I had a lot of postnatal anxiety. I was really concerned that this was going to come up again with Luke but I’ve handled it all quite well. My psychologist is probably wondering how I went, and I’d have a story to tell her!

I’ve not gone back to therapy, but one thing I did start trying recently is going to a meditation class and I think it’s helped me. I also go to the gym every day. The kids go to the creche, I’ve got my friends there, we chat and have coffee afterwards. I keep doing that – that’s my normality.

Are they cool with Luke’s tube at the creche?

They are – and they don’t need to feed him. They were very nervous at first because they didn’t know what it was, so I showed them the NG tube, hooked the feed up and explained that it goes all the way to his stomach. They were like, all the way? And I was like, yeah, there’s a good 28cm worth of tube there!

Luke recently transitioned to a G-tube, what’s that been like?

Overall, the transition has gone smoothly but surgery day was really tough. The procedure itself went well but was traumatising for both Luke and myself. As soon as we arrived at the hospital Luke knew something was up. He snuggled into me and I cuddled him back, holding his hand, kissing his forehead and telling him how brave he was and that it would all be okay. I hated this for him and my anxiety had been running high for weeks, but I needed to hold it together and stay strong for him.

The doctors had trouble getting him to sleep and it just went on and on. I was warned it would be hard to see but thought “it’s all good, I’ve got this”, but I didn’t have anything. It became too much to handle and I was overcome with so much built up pressure from the months leading up to this day, the fear of how on Earth I was going to handle another big change and seeing Luke petrified. I was about to pass out and was quickly taken out of the operating room, leaving Luke still wide awake and scared. Hello mum guilt, you’re back again!

I was comforted by a father of a 15-year-old girl. He brought me a tissue and told me he knew the feeling because he’s an experienced medical parent and had been in my position many times before. We chatted while both our kids were in surgery. It was so humbling and reassuring to chat with a like-minded parent who just gets it.

Fast-forward to now, two weeks post-surgery, and Luke has completely come out of his shell. It’s like he has a new lease on life! He has not stopped smiling and has quickly become quite an adventurous rascal. He’s started putting food back into his mouth after weeks and weeks of refusing and his eyes have stopped continuously watering – something I questioned with many specialists who could never give me an answer. It breaks my heart to think that for the past 16 months he was uncomfortable.

The continual stares, feelings of being watched and invasion of personal space by curious children have also stopped. One of the best things? No more tube and tape changes! Besides the medical trauma, it’s been a positive experience so far. Luke is happy and almost fully healed.

What advice do you have for parents who are new to tube- feeding?

I had a lot of self-doubt about it, so to parents who are new to this, I’d say you’re much more capable than you think. I’d also say to take each day as it comes and try to find acceptance. Tube-feeding is not the worst thing in the world. Without it I would have a very sick little boy – if I even had him at all. It’s a bit brutal to think about it like that, but that’s the reality of it. It’s all thanks to that tube that I got to bring Luke home and have him here today.