The feeding tube that once felt like a symbol of fragility for this family is now a source of strength.

Daniel Emborski has been tube-feeding since he was three days old. The now two-year-old, bright blue-eyed youngster has a rare genetic condition called Mulchandani-Bhoj-Conlin syndrome – one that’s impacted his development from Day Dot.

“When Danny was born his suckle was very weak – almost non-existent – which led to significant weight loss,” says Daniel’s mum, Becca Emborski, who spent 40 days in the NICU with her baby son. This is where he first received a nasogastric tube and, eventually, a gastrostomy (G) feeding tube.

“As a new mother, I went through an emotional rollercoaster – an experience I’ll never forget,” says Becca.

“My husband, Nathan, and I felt a mix of sorrow and fear. Hearing that our child needed a feeding tube brought a deep sadness, because it meant our baby couldn’t eat in the natural way we had hoped for. It felt like something so basic and nurturing was taken away from us. The initial sadness left us carrying grief, guilt, and a sense of helplessness.”

Much has evolved for this family since those early days. Living in Bradenton, Florida, with his baby sister Elena and two dogs, Sandy and Emma, Daniel is thriving with his feeding tube. And his parents see this device in a very different light.

Here, Becca shares some of their story – and her advice for fellow parents in the tube-feeding space.

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

Danny received his G-tube prior to being discharged home from the NICU. The first year of his life we dealt with the feeling that the tube symbolised illness and fragility. It was a constant reminder that things are going much differently than we had imagined. But now, as we see our son Daniel grow and thrive, our perspective has changed. Instead of seeing it as a foreign object, we see it as Danny’s tool for survival.

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

We got comfortable with tube-feeding after the first year. The fear became less and less because we saw, day by day, that the tube doesn’t define him – it supports him. What we once thought was a symbol of weakness is now just Danny’s tool to thrive.

Because of Danny’s slow gastric motility, we had to run feeds over one hour and, due to his severe reflux, keep him upright for one hour after that. So feedings took two hours – and he was fed every three hours. It felt like we were feeding him around the clock.

Now that Danny is older he is receiving whole food blends through his G-tube. His reflux has subsided, so we’ve been able to transition from a feeding pump to syringe feedings, which are much quicker.

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

Carrying the responsibility felt isolating. Danny lost weight all the time if we weren’t on top of his nutritional needs. Because of frequent dietician turnover and a GI team that was too busy to adjust his tube-feeding plans in real time, I made myself responsible for calculating Danny’s nutrition. I’m a critical care pharmacist and have a strong background in nutrition, so it became more like a ‘job’.

That’s not a role that I should have to take on – and it resulted in a constant balancing act of being dietitian and mum.

Feeding, which should have been this tender and simple thing, turned into math, calculations, and formulas. That shift added a lot of stress and grief, because I had to monitor milliliters, calories and growth charts instead of enjoying snuggles and watching my son hit his milestones.

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

We love the Supporting Tubie Babies group on Facebook. I also help manage a Mulchandani-Bhoj-Conlin Syndrome Facebook group along with another tubie mum. For tube-feeding accessories, we rely on our syringes and our Kate Farms Whole Food Blends.

Can you tell us about the funniest, messiest or most awkward tube-feeding situation you've found yourself in?

Because of Danny’s nutritional needs, at one point, we had to feed Danny two times during the night. Nathan and I will never forget the countless times we ended up feeding his bassinet or bed. Something about the extreme fatigue made us think we connected the G-tube correctly, and then we’d go to disconnect him and find tube-feed everywhere but in his belly!

It’s funny now but, boy, it wasn’t funny then.

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

I know how overwhelming it feels in the beginning. Hearing your child needs a feeding tube can feel scary, medical, and so far from what you expected. I remember the sorrow, fear, and the weight of responsibility. But here’s what I want you to know: it’s going to be okay. Over time, the tube becomes less intimidating and a quiet helper in your child’s journey.

There will be challenges, but you’re not alone. And each day, you’ll find yourself stronger. Celebrate progress, not perfection. Allow the tube to be a support, not a setback. This season, as hard as it is, does not define your child. You and your child are stronger than you realise.

“Celebrate Progress, not Perfection”