From Chills to Skills
When life threw her curveballs, here’s how this mum found her footing – and supported her son to flourish.
Natalia Cordero co-hosts the Medical Momma Drama podcast – a title that tells you a bit about this solo parent.
She and her 15-year-old son, Dylan, who has a very rare genetic condition, have taken a road less travelled. There have been soaring highs, gutting lows and, as her listeners know, all kinds of messy moments – emotional and literal.
Tube-feeding entered Dylan’s life five years ago. At first, it hit Natalia hard. Today, she’s basking in the positives it’s brought.
From her Atlanta, Georgia home, where she and Dylan live with her parents – aka their support crew – Natalia shares some of their story with The Blend.
Why is tube-feeding a part of your family's life?
Dylan was diagnosed with epilepsy, MECP2 duplication syndrome and cortical visual impairment when he was 10 months old. Dylan ate by mouth until age 10, when a terrifying increase in seizures caused him to lose the ability to eat orally.
When did tube-feeding start happening for your family, and how did you feel about this at the time?
Dylan was having about 70 seizures a day so, after a couple of days of this, I rushed him to the children’s hospital, where he was admitted immediately because he was underweight. Dylan was sedated to control the seizures. Shortly after that, I was told that he needed to get surgery to get a gastrostomy (G) tube for him to get the nutrition and medicines to control the seizures.
I have to be honest – the word “G-tube” gave me chills. I felt the world was crashing down on me. Like I was losing my son and he would never be himself again.
Thankfully, the surgery was a success – but I immediately went into grieving mode. It felt like part of my life as a mum was dying. I had to let go of watching my son eat and enjoy his meals, going out to a restaurant or cooking for him. I felt angry, sad and alone.
I was also being introduced to a whole new world called “tube-feeding”. A world that came with equipment, supplies and more.
How do you feel about your child tube-feeding nowadays, in comparison to how you used to feel about it?
Tube-feeding has been such a positive change in our lives and so beneficial for Dylan’s health. I’m so grateful for the decision the doctors made to get him a G-tube.
What helped you get comfortable with tube-feeding – both practically and emotionally?
After coming home from the hospital, creating a schedule for Dylan’s feeding time helped me feel more in control. I also formed routines for replacing feeding bags, washing syringes, stocking formula and ordering monthly supplies.
As Dylan got healthier and his seizures started to get under control, I learned to love our new feeding style and the tube-feeding world. I was over my grieving period and started to get more comfortable with his G-tube.
What are the biggest challenges you've faced – and maybe still face – in your tube-feeding experience?
The biggest challenges I've faced at the beginning were finding the proper amount of formula for Dylan and the correct times for feeding. I was afraid of overfeeding him or starving him, but I got together with his GI doctor [gastroenterologist] and a nutritionist and we created a plan that worked just fine.
The challenge that I still face, until this day, is Dylan playing with his G-tube. Even with garments on, he likes to twist it, so I have to keep an eye on him at all times because it has come out in the past.
What are your go-to tube-feeding accessories, communities and/or resources?
I bought the Hero Tubie Portable G-tube Feeding Pump Hanger/Base, which works perfectly with the Infinity pump and 500ml bag. I chose the blue one and had it personalised with my son’s name. I love it – it lets me hang his feeding pump anywhere. I found it on an Etsy shop and, around the same time, I joined a Facebook group for tube-feeding families in Georgia. We share questions, tips, and support. It has truly been lifesaving.
Can you tell us about the funniest, messiest or most awkward tube-feeding situation you've found yourself in?
While out in public with my son, I have people stop and stare when I'm trying to feed him. It was awkward at the beginning but, now that I'm more used to it, I understand not everyone knows what tube-feeding is – and how beneficial it is for people who need it.
What words of advice do you have for people and families who are new to the tube-feeding experience?
Tube-feeding is a whole new world! It may be scary and even frustrating at first, but it's a lifesaving medical tool. I encourage everyone to not be afraid and ask questions, you are not alone! There are hundreds of resources for us and we must utilise them. Tube-feeding becomes easier as time goes by and it will become a positive part of your daily life.