Editor’s note: Occasionally, we invite a young adult to write a first-person account of their childhood experiences. We hope their reflections shed light on certain circumstances so that parents gain insight as they care for their own families.
A year ago, at the age of nineteen, I was diagnosed with FOXG1 syndrome, a rare genetic disease with a range of symptoms from minor to severe. Each child’s symptoms are characterized by their specific mutation of the FOXG1 gene—my symptoms look similar to cerebral palsy but with a movement disorder. Whole exome sequencing revealed a 460 duplication—an extra G nucleotide in my DNA—explaining why I don’t walk, talk, eat, or control my laughter.
Since there is no cure yet, my treatment revolves around symptom management and assistive technology and equipment, like wheelchairs and standers. Some children and adults can use hand-activated switches (buttons) or an Eye Gaze device (a tablet that can track your eye’s movements) to communicate. These didn’t work for me because I have involuntary movements in my extremities, making it difficult for me to press a button or hold my head in a position long enough to focus my gaze.
Over time, my mom learned I could use my chest, instead of my hands, to hit switches. We are a DIY family, so my dad built “Tell Us Abey,” my communication system. It combines several switches with my computer, each controlling something on the screen. I use this system to chat with friends, take exams at Columbia University, and write about my disability.
Life before my G-tube
I’m told I was a good eater when I was born, but I spit up a lot. By one year old, I was underweight and unsuccessful at eating solid food. My mom was committed, but no amount of her love and persistence would change my inability to chew and swallow. My gastroenterologist, Dr. Kazlow, switched me to Pediasure to increase my calorie intake. It had everything I needed to grow big and strong, in theory.
No amount of my mother’s love and persistence would change my inability to chew and swallow.
While I was able to drink from the bottle, I still vomited, so I didn’t gain weight. In time, I was diagnosed with “failure to thrive.” Can you imagine hearing that I was a failure? I was a baby! Babies should not be labeled with “failure,” no matter their condition. Aside from the insensitive diagnosis, my mom was upset—she was worried about what to do next.
Dr. Kazlow said I would need a feeding tube. A surgeon would make an opening called a gastrostomy from my belly, just below my ribs, into my stomach. This g-tube (gastrostomy tube) would eliminate the need to coordinate swallowing. They hoped my reflux, which was blamed for my vomiting, would improve with time and medication. At seventeen months, I had my surgery.
For the next two years, my parents fed me Pediasure using a feeding tube and pump, but I still didn’t gain weight because my severe reflux continued to cause vomiting. I vomited after every meal, at therapy, on the street, in restaurants… it was endless. When my mom drove me to school, she covered me with a towel to keep me clean.
Finally, my mom called Dr. Kazlow and screamed, “How would you like to throw up after every meal for your entire life?!” He agreed it was time for another surgery. The next step was a procedure called a Nissen fundoplication. The surgeon created a one-way valve between my esophagus and my stomach, blocking stomach contents from traveling to my esophagus. It was done laparoscopically, which means they made tiny incisions and used a camera to see what they were doing. It worked perfectly—I never vomited again.
Life with my G-tube
The truth is, I don’t remember my surgeries—they both took place before I turned four. In my memory, I grew up getting my calories, vitamins, and minerals through my tube. I ate only for recreational purposes, which means I ate for fun. I ate socially and only what I wanted, when, and if I wanted. I was never forced to eat. My parents bought me my favorite things to encourage my eating—Boursin cheese, chocolate mousse, and tubes of cannoli cream. My friend Mike helped, too—he made me the inside of deviled eggs.
At school, I ate during snack time and was tube-fed at lunchtime in the nurses’ office. I was at a school for medically fragile kids until eighth grade, so I was not alone at lunch. I had buddies from other classes who also were tube-fed by the nurses. For us, it was just another way of eating.
At home, I ate very little by mouth. My mom prioritized therapy and academics. She offered food but knew recreational eating wasn’t as important as reading or times tables. My tube relieved us of hours of frustration trying to get adequate nutrition into my digestive tract.
My tube relieved us of hours of frustration.
By high school, there was even less time for eating, and I soon realized it wasn’t fun for me. As I got further in my education, I needed to spend more time producing high-quality work. When I had free time, I didn’t want to spend it struggling to swallow a tablespoon of whipped cream in fifteen baby spoonfuls only to drool half of it out on my shirt. Ultimately, the choice to stop eating orally was my decision, and my parents supported it.
My feeding tube formulas
While the delivery method hasn’t changed in my nineteen years, the formula has. I started with Pediasure, which worked well, but I couldn’t digest it fast enough, so one of my meals happened while I slept overnight. All of my pajamas had slits to run the tube up my leg, so my involuntary movements didn’t cause me to pull it out.
After Pediasure, I tried the ketogenic diet to prevent my seizures that weren’t well controlled with medication. It required a formula made from powder back then. I had no trouble digesting it, but it didn’t affect my seizures well enough, so I went back to Pediasure. Soon after, we found a medication regimen that worked instead.
Later, in my teens, we tried a high-protein formula for weight gain. When that didn’t agree with me, we found a peptide-based recipe. Every child has different needs, but the peptide formula has been the most successful for me.
I don’t always need to have a peptide formula, though. When we are out and don’t bring an extra carton, a milkshake will do. Anything you can drink through a straw can go in my feeding bag without terrible consequences.
As many children do, I take my medicine for epilepsy and movement control through my tube. It is the ideal delivery method because swallowing is time-consuming and difficult for me.
Tube-feeding is not like eating
My parents handle everything about my medical care other than actually feeding and medicating me, which is done by aides. I am a recipient, not a participant in the process. You may think that means I have no control over what goes into my body. You may also think you would not like being told what to eat and how much is enough. But here’s my lesson for you: tube-feeding is not like eating.
Here’s my lesson for you: tube-feeding is not like eating.
I feel hungry and full, but I don’t feel the formula going into my belly. I cannot taste it. I enjoy the smells in the kitchen—chocolate, coffee, rosemary, and thyme— but formula doesn’t smell in a feeding bag. Tube-feeding is a neutral experience. It’s not painful, nor pleasurable. It is just an ordinary necessity. For someone who enjoys eating, this may sound disappointing, but for me, it’s normal.
It may be difficult for you to imagine that eating by mouth is unnecessary when it is integral and essential to your life. Understanding my mom well, you may feel saddened because your child isn’t able to eat like everyone else. While those feelings are valid, getting nutrition is more important than how you get it.
Talk to your kid, but listen to them, too
If you are considering a tube for your child, communicate with them about the surgery process and being fed through a tube, both before surgery and as they grow. Even if they cannot respond, tell them what is happening to their body. Except for the youngest children, they will understand some of it—maybe even more than you know. Do not assume that a lack of speech is a lack of understanding—tell them everything, no matter what.
Do not assume that a lack of speech is a lack of understanding.
If your child has a tube, offer them the opportunity to be part of the process. Ask if they are hungry, and be willing to adjust the timing of feeding based on their response. For non-verbal children without communication devices like mine, responses might be a movement or a facial expression. It may take time to match their responses with meaning, but their responses do have meaning. Developing a reliable signal for “no” is a good place to start. Being the recipient does not require ceding all control. While children may not be in charge, they can still weigh in. And, like any other child, your child likely wants to participate.
My parents decided to place my feeding tube at the recommendation of Dr. Kazlow, whom I still follow up with once a year. He declares me a complete success—I am healthy, strong, and a good weight for my height. While I don’t eat recreationally anymore, I could take it up again. I probably won’t because struggling to eat outweighs any pleasure, as well as any desire to fit in. I’d rather use my time to do what I want.
When my family sets the table for dinner, the question is asked, “How many people and how many eaters?”. I sit at the table, and my food is delivered directly to my stomach through my tube; no chewing or swallowing is required. I spend my meals enjoying the company of my family and friends. There is no more stress over getting enough nutrition. There is no mess to clean off my face and clothes. I eat while my parents eat, and when mealtime ends, we all continue living our happy, healthy lives.
To learn more about feeding tubes, see the Rare Parenting Complete Guide to Feeding Tubes.