Tube Feeding A Child: The G-Tube That Saved My Son’s Life & My Sanity

Jamie Sumner
Special needs mom and author
02/02/18  2:34 PM PST

Tube Feeding A Child: The G-Tube that Saved My Son’s Life & My Sanity

My son was born ten weeks early. Just twelve hours after his birth, we got confirmation from the Mayo Clinic of his syndrome, a weird and rare genetic anomaly. It flips the switch on the pituitary to make him grow fast as lightning, or parts of him anyway. In his case, it was the tongue. Not so adorable then, the tongue sticking out on the ultrasound.

I was still processing this news while eating a gyro and spicy fries when the very consistent back spasms I had been complaining about to my husband become something more.

“Good thing you knew about that tongue” said every single nurse, doctor, ENT, and emergency technician when I walked into the ER already six centimeters dilated. And it was good. They had everybody at the ready and swooped him into his incubated and intubated nest within seconds after delivery.

But none of this information would get us out of the NICU. Only a tracheotomy would be our saving grace. The hole in his neck would bypass the tongue and viola!, we had a safe and thriving baby. And he was taking a bottle on his own.

“It’s a miracle! Most trach babies can’t navigate the suck-swallow-breathe. But look at him! He’s a champ!” they said when we were finally discharged after twelve weeks.

tube feeding a child

And so, I did not talk about the amount of milk that leaked out the side of his mouth or that it took upwards of thirty to forty minutes to get him to finish a bottle. I knew what a G-tube was, I had seen the practice dolls at the hospital with holes in their bellies and spouts like an inner tube. We’d already put an extra hole in him. I wasn’t going to volunteer another one.

But after a few months, I found myself sitting alone on our back deck crying and rocking back and forth after a particularly hard feeding. His growth had slowed. It was taking him so long to eat that we barely had time to recover. It was back-to-back torture. Feeding wasn’t bonding. Feeding was a battle that we waged against the scale.

And then he quit. One night he had had enough. He held up the white flag and would not take another drop. I cried, as I always did. I swaddled and rocked and switched bottles five times, like I always did. Nothing worked. I looked at him looking at me, our tired eyes mirrors of each other. It was time to surrender.

One minor outpatient surgery later, I found myself pushing the stroller through the leaves on a late autumn day while a feeding pump gently delivered the milk that had been our enemy into his newly-placed G-tube. “Look at us multitasking!” I said to him. He listened and laughed, two things he’d never had the energy to do before.

We were finally bonding during mealtime and this G-tube felt not like a loss, but a victory.

child with special needs

Jamie Sumner is a special needs mom, author and blogger.

Read her blog, The Mom Gene.

Follow her on Facebook.

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1 comment

  1. Oh my , I am so glad I read this article !!my son has a rare genetic condition as well – called an inborn error of metabolism whereby he can’t process protein properly.
    I have been considering getting a gastronomy tube for a while now. This last month has been absolute hell . I can relate to the long food battles , with both of us ending in tears and me desperately trying to cling to the last of my sanity . Thank you for this . I have made up my mind now.

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