My Child was Diagnosed with ‘Failure to Thrive’
Am I a failure as a parent?
Come eat your pizza so we can have popcorn!
You can’t have candy until you finish your ice cream.
How did we get here, to making pronouncements like these? To making nightly banana splits in the hope our two-year-old would eat more than just the sprinkles? To gaining 15 pounds each on all the avocado and cheese our son was refusing?
My husband and I notice our son’s size nearly every time we leave the house, because he’s assumed to be much younger than he is. From the stranger in the pediatrician’s waiting room surprised that the baby she thought was 8 weeks old was there for his 6-month appointment, to the airline employees asking if he’s a lap child, to the fellow Starbucks patron surprised to hear him speaking in full sentences, we receive frequent reminders that our son is smaller than average.
Those public assessments of our son’s size have been confirmed at our pediatrician’s office, where we’ve watched him grow from well below the third percentile weight-for-age curve to just hovering under it, to a very exciting jump to the tenth percentile at his two-year appointment, which suggested that he was starting to catch up to his peers.
When we visited three months later, I was disappointed we wouldn’t be able to see our regular pediatrician, as I was excited to celebrate my son’s recent change in pant size. So I was floored when our pinch-hitting pediatrician told me my son’s BMI percentile had dropped by nearly ten percentage points and gave him the terrifying diagnosis of “failure to thrive.”
Failure to thrive
Failure to thrive (FTT) is generally marked by significant changes in weight or BMI. In pediatrics, FTT is often characterized by height and weight that fall below the third or fifth percentile of a growth chart. That seemingly vague criteria of “third or fifth” stems from the different growth charts available for monitoring children’s growth. The World Health Organization’s charts use the third percentile as the bottom curve, while the CDC’s charts use the fifth percentile.
Failure to thrive was initially designated as “organic” (with a medical cause) or “inorganic” (with a non-medical cause). A child with cystic fibrosis, for example, would fall into the “organic” category. A child with no medical explanation for FTT might fall into the “inorganic” category. In the US, inorganic FTT used to be viewed as a consequence of poorly-informed parents. Even when an organic cause for FTT had been ruled out, it used to be common practice to hospitalize children with FTT so that parents could see how to appropriately feed their children.
In a review of past and present clinical approaches to FTT, Arthur Jaffe notes that the organic/inorganic distinction is problematic because it ignores a more complicated and networked set of factors. Blaming the parents for inorganic FTT may seem reasonable because the parents are the ones feeding the children. But what happens when the parent is providing the right foods in the right amounts and the child, who doesn’t appear to have any significant medical problems, is still not growing appropriately? Jaffe notes the tendency of growth charts to normalize a specific rate of growth along a curve, when in reality many kids jump and drop from their curves without explanation.
Failure as parent
But I didn’t know any of these things at the time, and even if I had I wouldn’t have heard them. Almost instantly, I understood my son’s diagnosis of “failure to thrive” as my “failure as parent.” My son’s diagnosis reverberated through his entire life:
To eighteen months, when I asserted that my child could feed himself his black beans, and that those beans were a perfectly good source of nutrition.
To eight months, when was kicked out of daycare because he had finally learned to breastfeed and therefore started refusing bottles.
To three months, when people told me my child was spitting up so much because my formula-supplemented pumped milk was bad for him.
To six weeks, in the midst of my 8-pumps-a-day schedule, when the nursing mothers in the room couldn’t imagine why I would need a pumping alarm, because shouldn’t I just be painfully engorged like they were?
To three days, when I overslept that pumping alarm that first night after being discharged. With no crying baby to wake me, I’d slept five hours and feared I’d ruined my milk supply.
To twelve hours, watching my son sleep int he NICU while getting unsolicited e-mails from La Leche League about how breast was best.
During that first hour, when my (rounded up) four pound baby couldn’t nurse.
During my pregnancy, when I’d failed to psychically notice that my baby was starving inside of me from intra-uterine growth restriction.
“Failure to thrive” is the fear at the root of so much of our parenting. Fear of illness, injury, and death. Fear that our children won’t make friends. Fear that they will feel heartbreak. Fear that they won’t find a career they love. Fear that they won’t find happiness. On top of all those daily existential worries, I now added fear he’s never get to a point to have all of those existential worries because I had failed to feed him enough.
The next morning I spread butter onto my son’s toast. Over his howls of protest, I shouted that if he watched he would see the butter “disappear,” and I choked down the lie while he gobbled up the toast. Over the next few weeks, we ran taste tests of the various Pediasure varieties and their generic equivalents.
Consequences of FTT diagnosis
But should I have made these changes? Having now read more about “failure to thrive” and looking back on my son’s experience, I’m feeling a new source of guilt: guilt that our interventions were both unnecessary and potentially harmful to my son’s long-term eating habits.
Our substitute pediatrician made her diagnosis based on a single visit. She was seeing us for the first time on a busy day, preventing the long history-taking that would have identified or explained my child’s low weight. Our case likely set off a few alarm bells.
Physicians have to be concerned about medical child abuse, and failure to thrive can be brought about by a parent deliberately undernourishing a child in order to have that child admitted to the hospital. We presented some of the signs that might raise suspicion of medical child abuse. My pregnancy had complications. Our child was born at 37 weeks, exactly on the edge of preterm. He had spent time in a NICU. No one of these indicators is indicative of abuse, of course, but combined together they warranted scrutiny from this pediatrician, because parents who have more contact with the medical system at the time of their infants’ birth are at an elevated risk of medical child abuse.
The literature on failure to thrive also makes clear that no single measurement (and probably not even two measurements) are reasonable for making this diagnosis. I recently looked back at my son’s printout from that visit and saw it much more clearly than I could have during my initial rounds of tearful googling about failure to thrive. At his two year appointment, my son’s height was measured at 2 feet, 7 inches. Three months later, his height was 2 feet, 10 inches. That spike in growth meant that, even though he gained weight between the two visits, his BMI percentile dropped from the 10th percentile to below the 1st percentile. But was it a drop? That jump could have been 3-inch growth spurt, which seems unlikely. That jump could have been not a jump at all, but an incorrect measurement at one of the two appointments. It could also have been a problem of switching growth charts at the two-year mark, which would have meant less data was available to the pediatrician.
Surprised by these height measurements, I went back through my son’s records and found that he has been spurting and shrinking his entire life. Just four days before his 2-year appointment, he’d seen a different doctor who measured him at 2 feet, 8 inches, meaning that he shrank a full inch and dropped eight percentiles in length in just four days…or that it’s hard to measure squirmy children.
It appears that one poor measurement sent us through months of panic and protein shakes. Had we paused to consider that the pediatrician’s FTT diagnosis was based on just two measurements, either one of which could easily be explained by a stretching child, we would have perhaps made different feeding choices. Instead of opening the floodgates for what my son now calls “special drink” (Pediasure) and juice, or allowing unlimited ice cream in addition to whole milk, avocado, and oil — essentially, before buying into the belief that our son was truly failing to thrive — we might now not have a son who refuses to eat anything.
Although I’m frustrated that, as a result of our interventions, my kid now ignores my thoughtfully-prepared meals in favor of special drink, I also understand that his picky eating phase was probably right around the corner anyway. Additionally, his diagnosis has in a strange way helped alleviate the guilt I’ve felt over his size. One of my proudest parenting moments to date happened on our post-diagnosis visit to a pediatric nutritionist. Though it was perhaps a bad sign that her office displayed a five-foot tall plastic food pyramid (the pyramid having years ago been replaced by My Plate), I was thankful for that pyramid because my cranky, nap-ready child busied himself by emptying it of all its play food. He. named. every. piece. From apples, to tortillas, to milk, to chicken, to fish, to asparagus, to…farro. He insisted (crankily protested, actually) that the brown rice on display was farro.
My son knows what farro is. Granted, he generally eschews the farro for special drink, but he eats food. He knows food. He’s thriving.
Originally published at www.snackdinner.com.