When we brought our daughter Sammi home from her week-long stay in the hospital following cardiac surgery, we had an extra challenge to face. When we planned the surgery, we’d known that once we got her home (if we got her home), she’d need to rest. We’d expected that she’d be tired, that she’d be loopy from the medication. What we hadn’t expected was that she’d be one of the percentage of patients who undergo similar surgeries and end up with a complication called chylothorax.
Chylothorax is a long, ugly word for a leak in a thoracic duct. The thoracic ducts are part of the body’s lymphatic system, located mostly in the chest, and are responsible for — among other things — the processing of about 60% of the body’s dietary fat, which flows through them. Because the thoracic duct is located alongside the aorta, Sammi’s surgeon warned us that they might nick it with an instrument during surgery. “If that happens,” he said, “it usually heals on its own, but she might have to follow a special diet for a while.”
I barely listened. Special diet? I’d done special diets over and over again since Sammi was a baby. A diet would be no big deal. Also: it might not even happen! I did no research on chylothorax before Sammi’s surgery.
And then she had it. In clearing layers of scar tissue from the side of her esophagus, the surgeon had met with a thoracic duct, and the damage was done.
The diet, we learned, was fat-free. It didn’t mean fat-free the way that the weight-loss diets of the 80s meant “fat-free” — many of those foods, we learned, had a gram or two of fat. In a normal person with a functioning thoracic system, that’s close enough to fat-free. In someone with chylothorax, a gram of fat here and there would eventually leak out of her thoracic ducts and fill her chest with a thick, milky substance that had nowhere to go. Eventually, without more surgery, she’d drown from the inside.
Drown in fat.
So we brought our tiny, fragile-looking eight-year-old home from the hospital, and I began research on yet another crazy diet. The hospital nutritionist — useless, essentially — handed us a single piece of paper with a list of foods that kids could eat on this diet. The rule of thumb was that Sammi could eat anything with half-a-gram of fat or less per serving size. When I went to the store and began flexing my label-reading skills again, I realized that the nutritionist had put several items on the list that didn’t follow that rule. I called her from the store.
She paused on the other end, “Well, does it have a sauce or something?”
I rolled my eyes. Did she think I was an amateur? “No. It’s just corn. That’s the only ingredient.”
She hmmmed, paused again, and said, “Well, she can only have items that have half a gram or less of fat.”
“I know,” I said. “But she does love corn. Is there a brand you recommend that does have only half-a-gram per serving? You know, whatever you found that you put on this list you gave me?”
“No, sorry,” she said.
I threw the list from the nutritionist into the bottom of my purse and set off on my own, quickly realizing that this was the worst diet ever. The worst. Worse than the six-food-elimination diet, worse than the reflux diet. Battering and deep frying, I realized, can solve a lot of problems, and that tool was gone from my toolbox. I couldn’t bulk her up after this surgery, not yet. The best I could do was try, without the benefit of fat, to keep her full enough and — maybe — keep her from losing any weight.
She was so small. So diminished, and sad, and tired, and I wanted nothing more than to make her favorite soup, bake some welcome-home cupcakes, bring her little bowls of M&Ms in the afternoon. Instead, I pushed my cart through the store and cried. Saltines had too much fat. Edamame had too much fat. Chickpeas had too much fat. Tofu had too much fat. Sunflower seeds had too much fat. Every soy milk she’d ever drank had too much fat.
People brought us salads — beautiful, nutrient-dense salads — that I hid in the back of the fridge because they contained quinoa (4 grams of fat per serving), or balsamic vinaigrette (8 grams of fat per serving) or black beans (1.7 grams of fat per serving). Finally, in answer to all the offers of help with meals I suddenly had to turn down, I asked for washed and cut fruit. Nothing else.
In our family’s utterly vegetarian history, we’d eaten acid-free, wheat-free, dairy-free, soy-free, nut-free, and egg-free — sometimes all at once. I’d have chosen any of those over this fat-free diet. We stared down the barrel of six weeks of sautéing in water, of salad dressing made of vinegar and chemicals, of our only protein sources being lentils and egg whites.
For six weeks, the food was mostly terrible. And for six weeks, I watched Sammi suspended in time: waiting for the day we would make a mistake and she’d begin coughing, or the day we’d make it to the end of the diet and I could begin to feed her in earnest. After all this time — the years of strange diets, the endoscopies, the wait for this surgery and the time in the hospital, we still weren’t done. I began to wonder if it would ever be done, or if I would remain chained to recipe web sites and squinting at food labels for the rest of my life. I wondered what this would do to Sammi.
I filled her bowl over and over with blueberries, and my mind kept spinning.