Our daughter started life on a feeding tube. Then we tried to wean her off it — and began to understand the complexity of how children relate to food.
By VIRGINIA SOLE-SMITH
February 4, 2016
Violet looked perfectly normal, but she had been slowly suffocating for at least a week, and we had no idea. Violet seemed like an ordinary newborn: From birth, she cried when she was hungry, slept when she was full. When awake, she stared at us intensely; when she slept, she slept a lot — one night, for nine hours. When the time she spent breast-feeding went from 45 minutes to 20, then 10, then five, I thought the two of us were getting better at it. We weren’t. And the purplish tinge to her lips, hands and feet didn’t mean she was chilly. Violet’s heart was failing.
By the time we began to grasp this, the oxygen level in Violet’s blood was only 75 percent of what it should have been. She was admitted to Maria Fareri Children’s Hospital in Valhalla, N.Y., and put on a ventilator, the breathing tube snaked down her throat before she was fully sedated. Even with a machine breathing for her, Violet’s oxygen plummeted. When she hit 20 percent, a cardiologist threaded a catheter into her heart, where he inflated a tiny balloon and tugged, punching a hole through her interatrial septum to release a gush of pent-up oxygenated blood. That was the first time we broke Violet to save her. The next day, we began to learn how several congenital defects had made Violet’s heart ‘‘incompatible with life,’’ and how a cardiothoracic surgeon could cut apart veins and arteries and sew them back together in a life-sustaining pattern over the course of three open-heart operations. When done successfully, this Fontan circulation, as the process is known, enables a child to reach a healthy, if heavily monitored, adulthood.
But this isn’t a story about heart defects. It’s about side effects. When it comes to repairing a heart no bigger than a walnut, the list of things that can fall apart while you’re solving the most obvious problem is virtually endless. In our case, the collateral damage was swift and dangerous: Violet stopped eating.
At first, she didn’t have the energy. This is what had been happening during those initial short feeds — Violet was too oxygen-deprived to make an effort. But our doctors were determined that she regain the half pound lost while she was dying, so she was given a feeding tube almost as soon as she came off the ventilator. A nurse inserted a nasogastric tube into her nose, then pushed it down her esophagus and into her stomach. That tube was connected to a feeding pump beside her Isolette. The nurses ran a cocktail of formula and breast milk through the pump every three hours, pushing as many calories as possible into Violet, whether she was awake or asleep.