When Your Child Fails to Thrive

My oldest son was a really hard baby. An incredibly, unbelievably, heart-wrenchingly hard baby.

Of course, I couldn’t see any of that at the time. As a first-time mother,  I had no frame of reference. I thought it was normal.

The sleepless nights.

The intensity.

The never-ending crying.

I could not put him down. Ever.

Bounce, shush, bounce, shush, bounce, talk, talk, talk, talk.

I have never talked so much in my life. It helped, but it never helped enough. If I’d stop, if I’d slow down, he’d up the ante.

He could always up the ante .

I had friends who would drive around the block to put their babies to sleep. Mine would see the car and arch his back, already screaming. 

Do you know that desperate, choking, gasping cry that makes you sick to your stomach?

He did that the entire time we were in the car.

We went to the Cape that first 4th of July. We convinced ourselves that the three-hour drive would be worth it. As we sat in traffic that sunny day, I sat in the backseat, next to our son, bawling alongside him.

Please stop. Please, please, please stop. Oh my God, why aren’t we moving? I can’t do this. Can’t think. 

My husband, our driver, tried to distract me but there is no way to distract a mother from that type of cry.

I dreaded going to the bathroom, showering, running a quick errand.

I dreaded the nights. If we were lucky, he would sleep for a two-hour chunk. Then he was up hourly, then every twenty minutes, and then he was just… up.

So many people told me it would get easier.

I waited and it didn’t.

My friends' babies cried, but they didn't cry this much. They could put their babies down, if only for a little while.

I began taking note of the differences. Their babies slept. Mine did not. Their babies were calm. Mine was not.Their babies seemed happy. Mine did not.

Eventually, I began to see that my baby was not typical . 

Early on, he was diagnosed with silent reflux and put on medication. I told myself it would help.

For a time, I believed it was helping. I needed to believe it was working.

But things kept spiraling downward, especially when it came to the growth chart.

Failure to Thrive

At first, our pediatrician would note the changes.

At the last appointment, his weight was at the 75th percentile. Now he is at the 65th. It’s just something to keep an eye on. He’s probably just finding his curve.

It’s funny to think that he was ever at the 75th percentile but he was. I remember it. I have it documented. I have every appointment for those first three years documented. When your first child is on a dizzying spiral down that growth chart, you remember where he started.

Eventually, it became more than just something to keep an eye on. Our pediatrician was empathetic to our situation, but he explained that we would need to see specialists if the pattern continued, just to be sure all was well.

I couldn’t understand why this was happening. He nursed frequently. He never threw up. He was distracted, though. Any noise, any movement, and he’d pop off wide-eyed and stare at me. It was as if he was asking, “What was that?” (Of course, knowing what we know now about this little guy, that’s exactly what he was doing.)

We focused all our efforts on feedings in order to get that weight up.

My husband and I had a rule: NO talking. If I was nursing, no talking. If he heard my husband, forget it. Our best nursing sessions were just before bed when it was completely dark and quiet.

I’d get to every weight check a little early so that I’d have time to nurse him in the parking lot before heading in.

Please don’t pee, please don’t poop. Hang tight, hang tight.

When it came time to weigh him, my stomach was in knots. If I removed his diaper and it wasn’t bone dry, I felt a loss. As the nurse fiddled with the scale, I’d utter a silent prayer.

Please gain please gain please gain please gain.

Over time, that prayer changed.

Just don’t lose. Please don’t lose.

The scale was never kind to us.

At one appointment, just before my son turned 6-months, our beloved pediatrician informed us that our son was teetering at the edge of the growth chart.

Below the first percentile.

If his weight isn’t up by our next appointment, I’m going to have to refer you to MGH for Failure to Thrive.

I must have flinched when he said the words because he made a comment about how the term was a terrible one.

It was.

It IS.

His eyes were regretful.

I held it together in the office, just barely. Once in the car, I cried the whole way home. Just like my baby.

This wasn’t my first experience with Failure to Thrive. As a school psychologist, I had worked with many children who carried the diagnosis. These children were abused, severely neglected, medically complicated, or significantly disabled. How did we fit into that picture?

We took feedings to a new level. I moved a chair into our closet for nursing sessions. It was the darkest place I could find in our house. I started doing dream feeds, waking him on the rare moments when he was actually asleep to squeeze in more calories.

Meanwhile, our next appointment loomed on my calendar.

It felt suffocating, there wasn’t enough time.

I couldn’t FAIL this.

Failing as a Mother

At our six month appointment, we were off the growth chart entirely. When our pediatrician handed us the referrals for GI, nutrition, and endocrinology, I felt like a failure.

I felt that I was failing at the one thing I had always dreamed of doing, at the one thing I assumed I’d be naturally good at: motherhood . I couldn't hide the tears this time. He assured me it was just a precaution. My son was developing well otherwise, my husband had been small, we were just being careful. We wouldn’t want to miss anything. I nodded through my tears, embarrassed and sad.

On the drive home, as my baby wailed, I wondered: How could I fail at feeding my child? Feeding is the most basic of needs. How can you fail that?

The appointments started right away. He was tested for everything, from allergies to celiac to Cystic Fibrosis. We saw more specialists in those first FTT months than I care to remember. I spent hours in the car, stuck in traffic in and around Boston, with a wailing baby.

How many calories do you burn, crying like that?

We saw a nutritionist at MGH who I began to despise with a fiery passion. She required us to keep a food journal. 

At the time, I had just started a new job. I was not making a great impression with all of these appointments and sick days (because when you take a teeny tiny little peanut to a million doctors’ offices, they get sick all the time). On my drive home from work each day, I would think about calories in and calories out. What would the log say today?

You gave him Cheerios? I don’t mean to sound crazy, but could you please not give him those anymore? They don’t have enough calories. Our nutritionist said to avoid them.

I sounded like a crazed new mom.

I guess, in retrospect, I was a crazed new mom, made crazier by the specialists at MGH.

I hated our GI/Nutrition appointments. I’d drive all the way to MGH with my screaming baby and then sit in a waiting room forever. Once our name was called, it was time to weigh in.This required that I strip my already-angry son naked and put him on the scale. Weigh-ins made him angry. They made me angry, too.

Once we had finished the weigh-in battle, which of course we had lost, it was time to sit down with the nutritionist. She’d flip through my food journal, calculator in hand, tallying calories in as if they were points earned.

We never had enough points.

The nutritionist would launch into a lecture, repeating everything she had said four weeks prior as if I hadn’t clung to every word of it the first time around. As if I was ignoring her advice. As if I didn’t understand that this was serious. She’d give me another handout filled with helpful suggestions, all of which we had already tried.

I wanted to scream at her, to shake her, to drag her home with us and have her try to get calories into this child.

As our son grew, things got worse because he never stopped moving. I’d watch him climb, run, jump, and tantrum and all I would see were calories expended. It was impossible to keep him calm. And he was always too busy to eat. And, believe me, I had tried all the tricks in all the books.

I need to remind you that watermelon is an empty calorie. Do not give him watermelon.

The nutritionist said this as she pointed to a day that I remembered well. We had been at the beach all day and, but for a few Town House crackers (one gram of fat and 19 calories per cracker), he had eaten nothing. We had, of course, offered him everything. 

But did you look at that entry? Did you see all the attempts and refusals? It was 4:00 pm and watermelon was the only thing he would eat. It was 80 degrees. I was happy he ate something.

She’d write a note and pop some numbers into her godforsaken calculator. No smile, no reassuring comment, no acknowledgment that this was hard.

I wanted to pummel her and her calculator.

And don't get me started on the renowned GI specialist with the non-existent bedside manner. We saw this man every four weeks for far too long and he never remembered:

• My name
• My son's name
• What tests we had taken recently
• Which formula we were currently on

Because he was a renowned GI specialist at MGH, he was always running behind and rushing. He’d start our appointments already behind, rifling through our file, searching for the information he needed.

Hello, Mrs. … Curley. How is… Leo today?

No eye contact, he was already shuffling for the next piece… which he also didn’t have.

So we tried the … 

I would interject, frustrated:

We tried the Alimentum. It made him throw up and then refuse liquids for 48 hours. I called the office about it.

I wanted to clobber him, too. I didn’t understand why he couldn’t just take a minute outside our door to review our file. It was maddening, insulting.

But the most infuriating part of our appointments happened at the end. It was at this point that I would inquire, every single visit, if it was possible that all of this was somehow related to silent reflux. I would explain how he still cried a lot. Maybe eating was painful? Perhaps his baseline was belly pain? Could it be related?

Without fail, he would tell me that it was impossible for it to present this significantly. And then, as a way to wrap up the appointment, he would take note of my child as if for the first time. My son, who had been in the car, in the waiting room, and two appointments, would be climbing the walls at this point. 

Wow. Is he always this active?

He asked this question every single visit. And he smiled when he said it. I had all I could do not to seethe, “Put it in your file!”

And so the appointments with GI and Nutrition continued. So, too, did the weigh-ins, high-calorie formula, weight-gaining powders, and tips and tricks. We put oil, butter, cream, Duocal in everything. We recorded it all. Calories in and calories out.

And still he did not gain.

I worried about what we were creating. Would he ever eat normally? Were we creating irreversible and unhealthy habits? Would we ever have an answer?

In August of 2009, when my son was just shy of 1.5 and I was 7-months pregnant with our daughter, the GI specialist ordered an endoscopy and abdominal ultrasound to try to get at the cause of our continuing issues. I had to be in Boston at 6:30 am. My son screamed the entire drive there and while waiting for his procedure… until the anesthesiologist appeared. The anesthesiologist that morning was fantastic with my son. He had him laughing the entire time. He explained the procedure to me and said that, typically, moms come into the room and sing to their child until the anesthesia kicks in. He described what this would look like… and then he noticed my belly.

You’re pregnant! Congratulations! I’m just going to need to check with Dr. [GI-Specialist-Who-Shall-Remain-Nameless] to see if it is safe for you to be in there since you are so far along.

Then he gave my son a balloon glove that looked like a rooster and took off with a wave and a cock-a-doodle-doo. When our GI doctor appeared, I told him that the anesthesiologist had asked me to check with him about entering the room before the procedure. He seemed perplexed and asked, “Why wouldn’t it be okay?” and when I told him he blinked and asked, “You’re pregnant?”

I had been seeing this fellow monthly since my son was 6-months-old and I was noticeably pregnant. Once again, I wanted to pummel him. And not for the last time.

They ended up letting me in the room with my son, where I sang You Are My Sunshine to him, along with a chorus of happy nurses, until his little body went limp in my arms just as they told me it would.

I started sobbing.

Do you know that uncontrolled ugly cry of late pregnancy? The one where you start and cannot stop? I did that in an OR until a very kind nurse gave me a hug and took me to the coffee cart where I drowned my sorrows in more coffee than is recommended for a pregnant woman.

My son recovered from the anesthesia almost immediately and was back to his usual wild self. The anesthesiologist cautioned me to keep him calm for the next 12-24 hours. That comment made me laugh for the first time that day.

Together, my son and I drove back to NH. One would think that after such an early and stressful morning that had involved anesthesia, he would fall asleep for part of the drive home, but he screamed until I pulled into the garage and turned the car off. I was relieved that it was over and hopeful that we would have an answer soon.

When the GI called to tell me that my son did, in fact, still have silent reflux that had made his esophagus painful, I wanted to reach through the phone and clobber him.

Our son was put on medication to treat the reflux and his weight gradually climbed until he was finally, blessedly, back on the growth chart.

I still remember the day when, a year later, MGH finally told us we no longer needed to come back. What a celebration we had that day!

This post has been in my drafts for two years...

… and it’s been in my heart and mind even longer. Every time I would sit down to write about this experience, I would be transported back to those early years. They were so hard. Years have passed and these emotions are as real and raw now as they were back then.

Our failure to thrive years were, by far, our darkest days. It is extremely hard to describe, in words, what it feels like, as a mom, to be told  that your child is not thriving.

The FTT diagnosis implies that you are failing at meeting a basic need. When you think of motherhood, you never think that meeting basic needs could be an issue.

If you are a parent of a child diagnosed with FTT, I want you to know this:

1. The term FTT is a terrible one.
2. You are not alone.
3. Listen to your gut. Even if you are a first-time mom and you are meeting with a renowned specialist, you know this child better than anyone else on the planet.
4. Find someone who has been through it already. I am eternally thankful for friends who supported me through it all.

And finally, I want you to know this:

It’s okay to say that it’s hard.

It’s okay to say that it sucks.

It doesn’t make you a bad mom.

YOU ARE NOT FAILING.

We battled FTT and came out on the other side. Our son is anything but a failure to thrive. In fact, I can barely keep up with his boundless enthusiasm and insatiable curiosity most days .

Now, it's your turn. Tell me: Have you battled FTT? What helped you on your darkest days?

A version of this article was originally published on My Little Poppies .

Cait is a school psychologist, mom to three amazing children, and an unexpected homeschooler. She loves nature, good books, board games, strong coffee, and dancing in her kitchen. She blogs about the journey at My Little Poppies . Cait co-hosts The Homeschool Sisters Podcast . Cait is also a contributing writer at Simple Homeschool and GeekMom. Her work has been featured on The Mighty and Scary Mommy. You can find her on Facebook , Instagram , Pinterest , Twitter and G+ .