Reason for Visit: Failure to Thrive

When my son was diagnosed with failure to thrive, to me that just meant failure to mother. I was the person responsible for making sure my baby thrived, and I was failing. Even worse than failing: I was a failure.

My son was born six weeks early and weighed 4 pounds and 1 ounce. Sitting in the green pleather chair in our NICU room, just days after he was born, I cupped his tiny head in the palm of my hand, amazed that a human could have a head the size of a tennis ball. When we brought him home from the NICU, we laid him down, legs splayed, in a roasting pan and used a small digital food scale to check his weight. The numbers jumped every week (“He’s 6 pounds today! Hooray!”), so we thought everything was going well. He was adorable and happy and, despite his skinny legs and protruding ribcage, seemed to be growing fine.

But then his weight plateaued. And he wasn’t hitting some of his milestones. At his seven-month visit (we went every month), our pediatrician expressed concern; the tiny points on his weight chart were beginning to fall away from his own curve. “Feed him ice cream,” she said. While I didn’t take that particular recommendation, I did work hard to feed him foods that were high in calories and fat. I poured olive oil on his avocado and added formula to my breast milk. I spent countless hours researching different ways to fatten up your baby. I was relentless and determined to get my child to gain weight.    

Several months later, as we were on our way to the pediatrician for yet another weight check, my husband looked at our son in the stroller and said, “He definitely looks bigger.” I was sure he was not only bigger, but heavier, too. The mirage evaporated, though, when the weigh beam settled. He had only crept up a few ounces over the course of a month, which wasn’t nearly enough to get him back on his growth curve.  

At that point, our pediatrician seemed to be both worried about and exhausted by us. Other than trying to feed him more, the only thing she could recommend was seeing a gastroenterologist (GI). And so we did. (And soon after we found a new pediatrician, too.) We left the GI appointment with a prescription for reflux medicine—apparently a common first antidote for infants with eating issues—and the name of a feeding therapist who would be able to give us tips to get our kid to eat more.

It wasn’t until we were home that I first saw the three words: failure to thrive. On the After Visit Summary, in small print, it said, “Reason for visit: Failure to thrive.” Why hadn’t our pediatrician used those words? I had thought this term was reserved for babies suffering from extreme malnutrition—yes, my son wasn’t gaining much weight, but he was otherwise doing well. So I did what’s never recommended when it comes to medical diagnoses, and what we all do: I opened my computer and googled it.

Failure to thrive in childhood is a state of undernutrition due to inadequate caloric intake, inadequate caloric absorption, or excessive caloric expenditure. … Most cases of failure to thrive involve inadequate caloric intake caused by behavioral or psychosocial issues.

– American Academy of Family Physicians, 2011

I read that last line over and over again. “Most cases of failure to thrive involve inadequate caloric intake caused by behavioral or psychosocial issues.” These words terrified me so much that I couldn’t read them to my husband, who was just inches away from me on the couch. I didn’t want to say them aloud. I didn’t want them to be applicable to me or to my son. As I stared at my computer screen, failure to thrive crept into my psyche and planted a seed of shame. Reason for visit: mother failed. Reason for visit: mother isn’t fit to be a mother.

The rational side of my brain eventually kicked in and said, “Of course this isn’t your fault.” I knew I was a good mother and that I was doing everything under the sun to help my son grow and thrive. I knew this wasn’t my fault. I knew something else was going on, that something else was preventing him from gaining weight. And yet, and yet… the irrational side of my brain kept taking over, pummeling me with self-doubt. Reason for visit: failure to thrive as a mother.

Eventually, the shame and guilt were tempered—though only to be replaced with a new fear—when we learned that our son has a medical condition that makes it difficult for him to swallow. It’s easy to move on when there’s a new puzzle to solve.

Since those weeks when I was mired by three little words, I’ve learned more about failure to thrive. I’ve learned that it’s both simple and complex—it’s often used as a blanket term for kids struggling to gain weight, and it can either signify a larger medical issue or not. It can bear little weight or a lot of weight. I’ve learned that it’s essentially meaningless without other, more specific descriptors. And, perhaps most helpful, I’ve also learned that I’m not alone in feeling the weight of this diagnosis: there are many parents out there who are also struggling to hold these three words.

Words can be powerful and mighty and beautiful and transformative, and they can also be nothing more than lines on a piece of paper. I no longer take my son’s medical diagnoses personally. Instead, I look at, and appreciate, what’s right in front of me—my amazing 17-month-old son who continues to struggle with gaining weight, but is thriving in a million other ways, nonetheless. And these days, I’m feeling very fit to be his mother.