Post-traumatic Pride
In a personal essay, Madeline Cheney, host of The Rare Life podcast, reflects on the heart-wrenching form of love that is tube-feeding your newborn.
I was making the well-worn 30-minute drive home from the children’s hospital we frequented for our infant son’s care. Kimball was about six months old and buckled snug into his car seat as the radio played.
The station was National Public Radio (NPR) – as it always was in those early days. Somehow it made me feel more connected to humanity to hear about politics and controversies. Using my brain in a way – any other way – than my constant striving to navigate the medical world and to understand a diagnosis so rare that Kimball’s doctors had never heard of it.
I was vaguely aware that the radio host was telling a story about prisoners of war. My attention on the road and what had happened at that day’s appointment brought his voice in and out of focus. Until he started to speak of hunger strikes and forced feeding via feeding tubes.
My heart started to thud as I listened to him speak of the handful of guards that held the prisoners down on a table, struggling and writhing, and of the people who then forced tubes up their noses, down the back of their throats, and into their stomachs. He spoke of how incredibly painful this process is and likened it to torture.
My head reeled, my heart hammered harder and harder as what he was saying sunk in. The tears poured as I jabbed a shaking finger to the radio power button and left the car in a humming silence as I further processed it all.
My son.
My infant son.
Newborn and squirming and thrashing about as nurses held him down on his intensive care unit bed, another nurse threading a tiny tube into his mouth, down his throat, into his stomach.
The feeding pump sending pumped breast milk dripping into his round belly, me feeling grateful for a way to feed him. Feeling repulsed by the discomfort of an experience that was meant to be a precious bonding moment between mother and child. A baby at the breast. A baby slumped in a ‘milk coma’, a sleepy, milky smile. Things he deserved but was so far from.
As we pulled into our driveway, I remembered moments of pure agony when the person holding him down was my husband and I was the one shoving the tube down his throat, praying it wouldn’t accidentally go into his lungs instead and flood them with milk. And possibly kill him?
I thought of the attempts to numb my breaking mama heart. To feel the torture I was inflicting, but to shove off the terrifying thought, unable to bear the pain of it. And here it was. Here was a savvy NPR reporter telling me of the horrors of being held down and of being tube- fed. He was talking about my son. Not directly. Without knowing. But he was.
It was isolation like no other to wonder if I was the only listener thrown into a trauma-induced frenzy while listening to the show.
But now I know better. I know we are far from alone. I know there are other shaking fingers that would have jabbed at that radio button. I know there are countless other parents who are terrified about placing the tube incorrectly. Who are pumping their milk in an attempt to nurture their child in what seems to be the only way possible. Countless others rushing to the beeping pump, who have kitchen sinks full of syringes to be washed.
Kimball’s four now. He’s weaned from his tube and if he had it his way, he would still have the gastrostomy tube button he received surgically as a baby. Something he considered just as much a body part as his toes. He cried for weeks about its removal.
When I remember the days I had to torture my child in order to feed him, I still shudder. But knowing he wouldn’t be here today if I hadn’t had that amount of bravery makes me burst with pride and gratitude. Knowing I chose to do what brought us both terror so he could live a life full of giggles and Buzz Lightyear brings a depth to my motherhood I wouldn’t have in any other way.