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When Your Child's 'Failure to Thrive' Diagnosis Makes You Feel Like a Failure

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My first baby wasn’t an easy baby.

He had colic and cried all the time. He had silent reflux and couldn’t be put down. He screamed in the car. He rarely slept.

And he wouldn’t gain weight. I nursed around the clock, but he just wouldn’t gain.

Caitlin Fitzpatrick Curley with her son.
Caitlin Fitzpatrick Curley and her son.

At first, our pediatrician would just note the drops in percentile. “He’s just finding his curve,” he’d reassure us.

But soon it became something more. It seemed our little guy was on a rapid descent down that growth chart. At birth, he was at the 75th percentile, but by 4 months, he was hovering near the bottom. Our pediatrician was empathetic but told us we would be referred to specialists if the pattern continued — just to be careful.

We tried even harder to get calories into our baby. I dragged a chair into our closet and nursed in the dark. I woke him up during the night to sneak in a dream feed or two. I arrived early to every weigh-in so I would have time to squeeze in one last-minute nursing session.

When it came time to weigh him, I felt a loss if his diaper was wet. As the nurse positioned him on the scale, I silently hoped he would gain and prayed with all my might that he wouldn’t lose.

The scale was never kind to us.

At our six-month visit, our pediatrician referred us to Massachusetts General Hospital for failure to thrive.

The words felt like a blow, and he must have read it in my face. He told me it was a terrible term.

He was right: It is.

I made it, just barely, to the car. My son and I cried together on the drive home.

How can one fail at feeding her child?

The appointments started right away. We met with the endocrinology, nutrition, gastrointestinal (GI) departments. We ruled out celiac, metabolic diseases, cystic fibrosis and cancer.

We were told to keep a food journal and record dirty diapers. We added high-caloric powder to his food. I discontinued breastfeeding, and he was put on various high-calorie formulas. We added oil and butter to everything.

Our lives revolved around calories in and calories out. I knew the calorie and fat content of everything. Every appointment loomed on our calendar. I felt suffocated. There was never enough time and never enough calories.

We drove into Boston monthly to meet with the nutrition and GI departments. My baby would cry all the way there, and we’d both cry on the drive home.

He just wouldn’t gain.

Our nutritionist would rifle through our food journal with a calculator in hand, tallying our calories as if they were points earned. We never had enough points, so she would repeat the same lecture from four weeks prior. She’d give me another helpful handout filled with strategies we had already tried a thousand times.

I wanted to take her back to our home. I wanted to see her to try to win at this game. I wanted her to feel what I was feeling.

I felt like a failure. I felt I was failing the one thing I had always assumed I’d be good at: motherhood.

We saw a renowned GI specialist who came highly recommended by many. He could never remember our names, rarely made eye contact and needed to be reminded of our care plan. And yet, he was a renowned pediatric GI specialist, and I needed him to help our son climb back on that growth chart. I felt I had no choice. I thought we were getting the best care.

Still, at every appointment I would ask him the same question: Could this be somehow related to silent reflux? Could he be in pain?

And every single time, he would tell me silent reflux doesn’t present this significantly. Things wouldn’t be this severe.

As our son grew, things got more complicated. To say that he was an active toddler would be a hilarious understatement. The child never stopped moving. He could climb walls and find his way out of any child proofing.

I would watch him run, climb, jump and tantrum, and all I could think was: How many calories is he burning right now?

I worried about the future. Would we ever get off of this dizzying spiral? Were we creating unhealthy and irreversible habits? Would he ever eat fruits and vegetables?

Eventually, when my son was a year and a half, the GI specialist ordered an endoscopy and abdominal ultrasound to determine the root of our continuing issues. It was an early morning and a long day. Watching a team of Boston’s finest put your baby under general anesthesia is no walk in the park.

We hoped we would have an answer soon and in three days we did. The GI specialist called to inform us that our son did, in fact, have silent reflux.

My gut had been correct all along. Our son wasn’t eating a lot because he was in pain. 

We were prescribed omeprazole to treat the reflux, and his weight gradually climbed until he was finally, blessedly, back on the growth chart.

On the day Massachusetts General Hospital released us from their care, we jumped for joy. We were free. Our failure to thrive years were among our family’s darkest days. It’s extremely challenging to put into words what it feels like to be informed that your child is not thriving.

Follow this journey on My Little Poppies.

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Originally published: May 11, 2016
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