Flying High

Not long after her feeding tube was placed, this cheerleader was back in the air, chasing her dreams, bringing thousands of supporters along for the ride.

WORDS // DANIELLA DOUGHAN

Eight-year-old Sutton Short had never seen anyone with a feeding tube before she had her nasogastric (NG) tube placed in

December 2023. The Florida-based youngster was more concerned about making it on to her dream elite cheerleading team, the Biker Babes, as a “flyer” - the athlete lifted into the air during a pyramid or stunt.

Sutton made the team, feeding tube in place, and now has the goal of competing in state and then world championships.

“It feels like a dream and it feels amazing,” says Sutton when we speak to her and her mum, Kali.

Before having her NG tube placed, Sutton was worried about how it would feel and whether she could continue doing what she loved.

“I was like, ‘What is it going to look like?’ ‘Am I going to feel it when it’s in?’ I thought I couldn’t cheer, because I thought there was no way I could tie it up like I do, so I thought it could get pulled out."

Sutton’s trick? Tying her NG tube up in her ponytail, thanks to a handy video from one of her Instagram followers, a gymnast who also has an NG tube. Sutton’s Instagram account has quickly fostered an online community of tube-fed kids and their parents, searching for and sharing advice.

"When I first got my tube, a couple of minutes afterwards, I kind of felt it in my throat, and it was uncomfortable to sleep because it was in my throat all night," says Sutton. “But then by the second day I had it, I didn’t feel it. A couple of weeks later I kept waking up in the morning and I’d think I didn’t have anything on me, but then I saw my tube and realised ‘oh I do have something on me!’"

Sutton’s sisters, six-year-old twins Sawyer and Merritt, also needed to get familiar with her NG tube. “My sisters were just worried, they thought it could come out very easily,” says Sutton. “Actually, in the pool once I was swimming and my sister Sawyer came swimming towards me and she kinda pulled my tube out a little and she panicked. She was so scared. My grandma helped me put it back in and it didn’t hurt because she’s a nurse."

Now that everyone has adjusted, Sutton says she hasn’t fundamentally changed since getting her tube put in, but there have been some unexpected benefits.

“I’m the same person, but I went from 28 to 38 pounds and I definitely have more energy. We were at this festival and it had this tall climbing tower and if you make it to the top you press a blue button. I couldn’t do that before - I didn’t have enough strength in my arms and my legs when I tried - but I did it with my tube. It felt amazing!”

When it comes to feeding, Sutton does a 10-hour feed at night and has recently adjusted to a one-hour feed during the day, after two daytime feeds caused stomach aches from the volume.

“Then for lunch I have something out of my lunchbox like half a bagel and some snacks while I’m on camp.”

Summer camp, Sutton says, is a daytime camp full of activities including acting, where she simply adjusts her tube to the task at hand. “We have a bunch of activities, so I’ll tie my tube up and then just put it down for my feeds.”

As for Sutton’s advice for anyone new to the tube-feeding world, it’s all about continuing to do what you love.

“I’d say, just tie it up in your hair with bobby pins or just put it through your shirt. You should try and do your activities. I was a bit cautious at first, but now I’m my normal self!”

5 minutes with Sutton’s mum, Kali

When did you realise that Sutton might need a feeding tube?

We’d been on this journey since she was a baby and never gained weight. It was seven years of feeding therapy and trying a high-protein, then a high-fat diet and pushing Sutton to eat and her fighting back and me feeling like I’m force-feeding my child. At the end of last year we were told Sutton’s weight was too low and that she needed to be tube-fed. It was overwhelming, stressful and nerve- wracking but I turned a corner in my brain and thought, maybe this will be a good thing. It was a real process of absorbing it.

How did you find the right balance of what goes in Sutton's tube?

We were in the hospital for a week, so we did a lot of experimenting there. We use the PediaSure Peptide 1.0 Cal formula and that has worked for a really long time.

Her night-time feed is pretty easy when she’s sleeping and it doesn’t bother her. It’s pretty flexible and we’ll start anytime between 8pm and 10pm - some nights she doesn’t get home from cheer until 9.30pm! Sutton does eat regular food, too, so I don’t feel as stressed about it if she misses something.

How did you help prepare Sutton for having her feeding tube placed?

She’s very smart and really likes medical things so it was just about being completely honest. We searched for videos of tubes being placed and it was really hard to find them. That’s why Sutton wanted her tube being placed shown on her Instagram - because nothing existed, especially for kids.

Sutton asked if she could still cheer with a tube, and I was like, “I don’t know, let’s Google it". We couldn’t find anyone else who did it, so once we found out from our doctor she could still cheer, Sutton said, “I want to be that person that people can find, and show everyone you can still do it”. That’s how we started her Instagram and that’s why she asks for everything to be put on there.

We started it in December 2023 and now Sutton has over 21,000 followers. It’s been amazing to hear stories from other tube-feeders all over the world. We get a lot of DMs from parents who find our account and their kids are just super grateful to see another kid happy with a tube. We get messages from parents whose kids are about to get tubes and Sutton will send them private DMs saying “good luck, you’re going to do great”.

How do you deal with unwelcome advice or comments?

The good far outweighs the bad and when we’re helping families, we know we’re doing the right thing. We’ll get a few Munchausen syndrome [a psychological condition where someone pretends to be ill] comments or people saying that we’re exploiting our child, but Sutton wants to do this. In the beginning I blocked a few people, but now her followers will clap back at people for us so I don’t have to.

Sometimes at cheer competitions, Sutton gets stopped and asked for photos which is really cool!

What are your hopes for how Sutton will eat in the future?

Our doctor is really progressive with the NG tube and feels as long as Sutton doesn’t mind it being on her face, there’s no problem continuing. She even has patients who put it in at night and take it out during the day by themselves. So if Sutton did need it longer-term, that could be an option.

Right now, Sutton changes her tape every week and her friends get excited. She designs her tapes herself and to her, it’s like an accessory. We are hoping to wean her off but she needs to get her weight to a stable level and then needs to eat enough to sustain her weight. It’s just one day at a time, one appointment at a time.

How often does Sutton need her tube replaced?

About every six months as long as we keep it clean. We’re very particular and we never give her anything without flushing it afterwards with seltzer water to make sure there are no clogs. We’ve only had to change it once, after about six months. Changing it is a whole process and we have to go to hospital because it has a stylet [a thin wire that helps during placement] in it, so she needs an x-ray to make sure it’s in the right place.

What advice do you have for parents who are new to the experience of tube-feeding their child?

Just know that it’s amazing. It really does help them so much - and it’s not as scary or complicated as it seems. You get used to it and when you see your kids doing so well from it, you realise it’s the right decision.

Have faith that the doctors know what they’re doing and that kids can adjust to way more than you think they can.

How do you feel when you see Sutton cheering and hear her speak so confidently about her experience?

I’m so unbelievably proud. I never thought she’d be changing people’s lives but she does and it’s incredible. It brings a lot of awareness to not only the tube-feeding community, but people who would never have an association with tube-feeding.

I think the cheer community is known for everybody looking a certain way. It’s not very common to have a disability in the cheer community - aside from disability teams - and Sutton is bringing a lot of awareness that you can have differences and still do what you want to do.