Magic in the Mayhem

The Once Upon a Gene podcast host gets honest on the messy reality of tube-feeding your child — and making it work.

PHOTOGRAPHY // TY KELLY

This particular predicament was new to Effie Parks. Her son, Ford, has a MIC-KEY* gastrostomy (G) tube that's been pulled out plenty of times in his nine years. But here was a different dilemma.

“For the first time ever, the extension piece broke in his tube,” says the founder of Once Upon a Gene, a podcast dedicated to families raising children with rare genetic conditions. Ford’s own neurodevelopmental syndrome impacts his development and mobility. He uses a wheelchair and relies on significant support to go about his day.

“I’d shifted Ford in a way I shouldn’t have and the extension broke,” Effie continues. “The end still attached to his G-tube was just spewing out food. It was like a geyser coming out of his tummy.”

Ford’s younger sister, Esme, was also on the formula-soaked scene in the Parks’ family home on Mercer Island in Lake Washington. Moaning of “the stink”, stoically, the seven-year-old held a towel over the stream while Effie ran and grabbed supplies for a speedy tube change.

“Ezzy was like my partner – I don’t know what I would have done without her,” says Effie. “I mean, you just have to laugh at it, because it's so ridiculous.”

Humour is a source of comfort for this award-winning advocate. Her candour around the challenges of medically complex life has seen Once Upon a Gene become a global community for caregivers.

Alongside the hardships and heartaches of a path less travelled, in chatting with other parents, the stories she tells also beam with happiness and hope. Much like the podcast host herself.

Chatting with The Blend, Effie shares some of her own stories of tube-feeding with Ford – and advice for families who are finding their way.

Ford was born super small.

I mean, he was like five pounds, two ounces, and he left the hospital at four pounds, five ounces. And he never latched – not once – not even a single little bit. So I went home with this baby who wouldn’t eat.

I bought at least $1000 worth of breastfeeding equipment and we were feeding him and feeding him and all he was doing was throwing up.

We started seeing lactation specialists two times a week. My husband Casey and I would both say, “our kid isn’t eating, he’s not swallowing any of this. There’s milk everywhere and if he gets anything in, he vomits”.

When Ford was almost four months old, our pediatrician said we needed to take him to the children’s hospital. We took him in and, when no one could get him to eat, they gave Ford a nasogastric (NG) feeding tube. They finally believed me.

We were sent home with a weighing scale.

My schedule was, first I had to weigh Ford, then I tried to feed him with my breast, then I had to weigh him, then I had to feed him with the NG-tube and weigh him again. Twenty-four hours a day, I had to weigh him, feed him, pump, weigh him, feed him, pump. I can’t even believe they made me do that.

A few months into this, the doctor was like, “Ford can't have an NG tube for that long”. And I was like, yeah, I know. I’m the one who brought that up. So he got a G-tube at about eight months old.

It took so long for someone to understand that there was something wrong.

Ford was sick. He was hurting. He screamed 24 hours a day. I have so many vivid memories of standing up, in the middle of the night, just singing him songs and trying to get him to stop screaming. He was in so much pain, because he was so hungry.

So when I got told he was getting a G-tube, it was such a relief for me. I didn’t really grasp that this was another hard thing. I also didn’t even really have time to process whether or not this was another loss. It was just, finally, some help. It was the greatest gift.

It took years to get the formula thing figured out with Ford.

When I say that he has projectile vomited at least three times a day, every day, up until he was about eight years old, I am not exaggerating. He’s now nine and he's just started keeping his food down. He’s on [Functional Formularies] Nourish Peptide and I toy with other things in my Vitamix.

Sometimes I give Ford a smoothie and I add protein powders to it. I’ve also found that yoghurt is really good for his tummy. But I’m not like one of those really organised people. Nothing is pretty or meal-planned and Ford doesn’t have his own freezer full of blended food. It’s kind of the Wild West – like everything else is that I do.

The thing with Ford is, if he's in his wheelchair, he's not in one place.

Period. We’ve been making some progress lately, with an ABA [Applied Behaviour Analyst] therapist, to have Ford come to the table with us while we have a meal and hang out. He’s been doing a much better job and staying for around 10 minutes – and it’s amazing.

We’re really trying to have a family dinner together because, for years, it’s all been crazy and mayhem around here. But we’re trying to change that.

Other tube-feeding families tell me it’s hard not having typical dinner table experiences.

They also say it’s hard having 15 boxes of tube-feeding supplies arriving at your door every 30 days. Unpacking it all and putting it away – which shouldn’t feel like that big of a deal – can sometimes be so exhausting and you just don’t want to do it.

So you just let it sit there, for days and days and days. Sometimes you just go and grab one food bag out of it and don’t unpack it. Sometimes, you just don’t have the bandwidth to deal with stuff like that because it’s just constant, right?

Then there’s how it takes up so much counter space and cupboard space. I’ve got cupboards in my kitchen that I wish I could put my glass dishes in. But instead, they’re stacked up and heavy on another shelf.

Some families are uncomfortable about tube-feeding in public.

They feel like people are staring at them while they feed their kid. I used to really have some strong opinions about the smash cake birthday parties I had to go to for the first couple of years with Ford. Man, that used to just break my heart in the beginning.

It’s like any time that you just go, ugh, oh yeah, it’s different for us.

But then, we come to realise the difference is good, right? It makes us appreciate life even more – how much more fully and luxuriously we can really sit in it when things are going well. We notice it deeply.

I love Ford’s feeding tube.

Sometimes, it's just the handiest thing. If Ford has the flu or a fever or whatever, I can put water in his belly. I can give him medicine that tastes like ass and he has no idea. Those struggles just get lifted away from us – and that’s a big deal.

There are so many benefits to tube-feeding. And in sharing our stories and – if we’re in the mood for it – answering questions, we can show people how it’s not scary. That it’s such a simple thing and it doesn’t need to be as medicalised as it is.

A monkey could feed a kid with a feeding tube. And we’ve all accidentally ripped our kid’s tube out. It’s good for people to know how quickly and how easily you can fix it – and that it’s all fine.

You have to find your people as soon as you possibly can.

And you can find them on podcasts, in books and through social media. Even if you aren’t actually talking to them, once you’ve found families who are going through similar experiences, you immediately feel a huge sense of relief.

You are not alone. And I promise you, you’re going to find a lot more joy out of this feeding tube than utter despair. That’s for sure.

Mess around with it – really feel it out and do what’s best for your kid. Pay attention to when you think they are too full, or if they have had enough calories, or if maybe today’s an electrolyte day.

Really pay attention to your kid.

And don’t take all the math that the nutritionist does in the office as the law. Kids don’t eat an exact amount at every moment of every day. You don’t have to do it that way. Talk to your friends, talk to other parents and just work it out with your kid. There are a bazillion different ways to do this.

This article was made in partnership with Avanos. For information about the MIC-KEY feeding tube, visit TubeFed by Avanos.

Please refer to your healthcare professional for Indications, Cautions, Warnings, and Contraindications for products mentioned in this article. Always follow the Instructions for Use. For specific questions regarding the procedure, please contact your healthcare professional.

* Registered Trademark or Trademark of Avanos Medical Inc., or its affiliates.