A young boy with red hair smiles at the camera, while an adult in the background rests a hand on his shoulder. He wears a green shirt with wooden buttons. The pair are in a green, outdoor setting.

If change was going to happen for this family, they had to be the ones to push for it.

“To anyone walking the hard and often hidden road of seeking a gastrostomy (G) tube for medication, you are not alone.”

This is the message Emily Smith wants to share – and she does so after supporting her four-year-old son, August, to find great relief through tube-feeding. Alongside his two younger brothers, mum, dad and four pet dogs, August has adjusted beautifully to his G-tube in a matter of months.

Prior to this, medical and sensory complexities presented struggles for the Saint Louis, Missouri-based fivesome. Who just happen, uncannily, to live in the same city as the geneticist who discovered August’s rare condition – DeSanto-Shinawi Syndrome (DESSH).

“With about 200 known cases of DESSH worldwide, the odds of having our greatest source of support so close to home are immeasurable,” Emily tells The Blend. “And yet here we are, right where we need to be.”

Here, she shares some of her family’s story.

A woman with long blonde hair holds her son, a boy with red hair, lovingly on her hip. She wears a white shirt and navy denim jeans. He wears a green short and shorts. The pair are in a green, outdoor setting.

Why is tube-feeding a part of August’s life?

Severe constipation is one of the daily battles our son faces as part of life with DESSH. It’s not just one thing – it’s a tangle of challenges. His muscles don’t quite work the way they should, thanks to gastrointestinal hypotonia. Sensory sensitivities make taking medication nearly impossible and autism limits him to eating just a handful of snacks – mostly a puree, like hummus.

Together, these hurdles formed a perfect storm of not being able to pass stool that often ended in hospital stays – long, draining visits where August couldn’t eat for up to five days at a time through the clean-out process.

As strong as he is – and truly, he’s the toughest little soul we know – the toll of these clean-outs became too much. We couldn’t keep watching him go through that kind of trauma month after month.

We advocated for a G-tube to bypass the trauma of his reaction to hunger and the nasogastric (NG) tube. One of our doctors pushed back on the G-tube proposal, however, saying: “it isn’t a routine use for constipation”. Their proposal was for us to leave the hospital with a permanent NG tube.

Us as parents, and even his nurses, knew that August would remove the NG tube himself at his very first opportunity – likely before we even got to the hospital parking garage. He was a fan of ripping out the NG. For us, it was not an easy decision, but a necessary one.

Having the G-tube now allows us to give him the medication he needs, deliver the nutrients he’s missing, and – most importantly – avoid the hospital stays that broke all of our hearts a little more each time.

When did tube-feeding start happening for your family, and how did you feel about this at the time?

It’s been two months now since we began tube-feeding and in that short time we’ve all found a sense of peace. Originally, we believed the tube would be just for one thing: to help manage August’s severe constipation by delivering the medications his body needed but couldn’t take by mouth. But once the tube was in, a dietitian visited us in the hospital, explaining that August would also receive daily tube-feeds to support his limited diet.

We hadn’t expected that – but in that moment, we felt relief.

Alongside the gastrointestinal challenges, DESSH also brings intense behavioral struggles and fractured sleep. And we’d long suspected that part of it was hunger – his small body running on far too little. The idea that we could finally nourish him properly, fully and consistently was something we longed for.

Before August’s surgery, all I really knew about G-tubes came from snippets I’d seen on social media. So, in truth, I knew very little.

What scared me most was the surgery itself. And yes, that first day was hard. It’s never easy watching your child in pain. But what followed surprised me in the most beautiful way. August bounced back with a strength that left me in awe. Within days, it was as if the incision didn’t bother him at all. He’s adjusted with more ease than I ever expected – and I count myself lucky that it hasn’t been pulled out.

How do you feel about August tube-feeding nowadays, in comparison to how you used to feel about it?

I was never able to breastfeed, though I tried – again and again. August’s low muscle tone made it too difficult and, eventually, I had to let that version of feeding go.

Maybe it sounds strange but now, when I tube-feed him, I like to think of it as our own kind of breastfeeding – a slow, quiet moment meant just for us. In those moments, I choose to see connection instead of struggle. It’s not the story I imagined – not much of our journey has been – but it’s ours. And in that I find a deep and lovely kind of bond.

A young boy with red hair smiles widely at the camera. He wears a white shirt and shorts and is sitting on a leather couch in a bright living room.

What helped you to get comfortable with tube-feeding – both practically and emotionally?

I knew from the start that the medical and feeding sessions had to be more than just routine – they had to be something fun, something August could look forward to. Otherwise it simply wouldn’t work. So we made it his special time to watch what he loves most on TV: babies. Now, when he says “Mama, medicine!” it’s with excitement, because he knows this moment is tied to something joyful and familiar.

I worried, at first, that seeing the tube on our son might be hard for me emotionally. But watching how much his behavior has softened, how his mood has lifted and how he has benefited from his improved nutrition and sleep, that worry has quietly slipped away. Honestly, it’s been replaced by gratitude and hope.

What are the biggest challenges you've faced – and maybe still face – in your tube-feeding experience?

The hardest moment for us was truly that first day – the shock of seeing August endure the pain of abdominal surgery. Trying to explain it to him and to hold his hand through something so overwhelming. It was a surgery we fought for, and yet watching him go through it felt like an emotional storm.

Perhaps the greatest challenge for me now is the unknown. A whisper of worry that follows me from room to room – what if the tube comes out? After all, we have a spirited, fearless four-year-old who’s full of life and mischief. I don’t know when that day will come, but I hope that when it does, I can find the calm and strength to meet it with a steady readiness.

What are your go-to tube-feeding accessories, communities and/or resources?

I’m still so new to the world of tube feeding – just starting to find my way through the learning curve. Along the journey, The Blend magazine has been a comforting guide. And then there’s Etsy – a treasure trove of thoughtful, handmade accessories. My favorite find for travel-friendly items has been from Nora Made Me, whose creations make life on the go just a bit easier and brighter.

A young boy with short red hair looks at the camera gently smiling. He wears navy blue glasses and a white shirt. He is standing next to a window in a bright indoor living area.

What words of advice do you have for people and families who are new to the tube-feeding experience?

If this journey with the G-tube has taught us anything, it’s this: that you know your child better than anyone – even better than some well-meaning medical professionals. Secondly, that you’re not in this alone. There is a wide, quietly powerful network of parents out there, one made up of those walking parallel paths who are ready to lift you when things get heavy.

We knew, deep down, that a permanent NG tube wasn’t right for our sweet boy. And we knew the constant cycle of traumatic hospital stays couldn’t go on. So if change was going to happen, we had to be the ones to push for it.

Trying something new can feel overwhelming. But if it brings even the smallest flicker of comfort, relief or joy to your child’s already complex world, it’s worth every bit of energy and courage it takes to advocate for that change. And the most humbling part? We never walked this road alone.

Through our little Instagram corner, we connected with other rare parents – people who had never heard our voices but spoke our language. They helped guide us, connect us with tube-feeding families across the globe, facing similar hurdles with medications and limited diets.

Some were in New Zealand, others in Switzerland – but somehow, their stories met ours in the most meaningful way. And in that, we found comfort. A reminder that even in the rarest corners of life, we are never truly alone.

If there’s one message we hope to share through this article, it’s this: to anyone walking the hard and often hidden road of seeking a G-tube for medication, you are not alone. Your struggle is seen, and your strength is honored.

To the medical professionals who may find their way to these words, we offer this story as a window. May what once seemed uncommon begin to feel known – even expected – for those living with rare and complex conditions. Let this be a nudge toward greater understanding.

Their Story, Their Way