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Tongue tie is real — and it’s serious

Last September, I passed baby Rex’s first pediatrician at the airport. I immediately felt sick to my stomach and like the wind had been knocked out of me. The doctor smiled and waved, but I was so suddenly sick I couldn’t meet his eyes. So he smiled and waved even bigger. I finally managed to glance at him, but judging by the confused look on his face, I didn’t match his smile. I wanted to scream at him, scratch at his stupid smile, tell him he could have killed my child. But I was frozen.




Baby Rex was given the label of “failure to thrive” by this doctor at his 2-month check-up. We spent the next 10 months in and out of medical offices and hospitals, trying to understand what was wrong with him. He would vomit huge volumes, had terrible eczema, never grew as he should, and most worrisome — he was often losing weight.

I took daily pictures of him for a while beginning at 2 months, and when I look back at them, I see a starved baby that would be the poster child for a charity in a third-world country.

Rex’s first pediatrician did not help me save Rex. Instead, he chastised me. He sent us to the hospital and never followed up to read the reports of the many, many tests they performed over our 3-day stay there. I asked about a lactation specialist, and he rolled his eyes.

He instructed me to wake him twice in the night, even though Rex couldn’t wake up enough to eat, and waking him only made it impossible to keep him awake during the day to get enough volume in his belly. When I explained this, he only instructed me more severely to wake him in the middle of the night. I feared he would call CPS if I didn’t obey his commands.

When I told him how much Rex vomited, he told me to simply keep him upright for a half-hour after each feeding. When I explained that didn’t work and there was much more at play here, he shrugged his shoulders.

I spent two months with this pediatrician, visiting weekly or more, sobbing on the way home from each visit because I had no more answers than when I walked through his doors. I honestly felt at times that Rex would die and there was nobody to help.

Around this time, a friend reached out to me and suggested the name of a lactation specialist. I know she was inspired to reach out.

I had known from Rex’s first week that he didn’t breastfeed correctly. I had been to the doctor twice in his first two months — once after a scary vomiting episode that left him pale, unresponsive, and lethargic and resulted in a 911 call — and had voiced my concerns about his skinniness. My concerns were brushed aside.

I had never had a child with any sort of medical problems, so when my fears were dismissed as nothing, I thought I was the crazy one.

When I went to see the lactation specialist, she took one look at Rex and told me he was tongue- and lip-tied. I had never heard of this issue before, but when I researched it, I found it could most definitely lead to failure to thrive. We had a surgery to correct the ties, and saw minor improvements.

Unfortunately, Rex was nearly 4 months old by this time, and severely behind. I now realize my milk supply was also affected, but nobody helped me understand that.

I sought out an occupational therapist to help me re-teach Rex how to breastfeed, and she focused instead on his eczema, declaring a milk (and possibly wheat, egg, oh who knows) allergy. When I questioned her, and insisted there was something more at play here, she brushed away my concerns. We weighed him, and he actually had gained incredible weight that week since the tongue-tie had been corrected, but still she instructed me to eliminate dairy from my diet and supplement with a special $40 can of formula.

He responded poorly to the special formula, and actually lost a half-pound that week because I followed her stupid advice. She never helped me figure out my milk supply. I never knew to ask.

I switched pediatricians and showed up with notes upon notes upon notes, terrified the new pediatrician would treat me the same, would dismiss my concerns, would send us back to the hospital. I took notes at every single feeding, I analyzed every weight loss and gain to understand its reasons, I monitored his bowel movements and sleeping patterns.

Instead of criticizing me, she looked at my notes, listened to my concerns, and told me I was doing a good job.




She was the first medical professional who treated me as the expert in my son’s health, and guess what — I was. She gave him a prescription for his eczema, which immediately helped him sleep better, which immediately helped him eat better, which immediately helped him gain weight.

She sent us for tests, and she actually followed up to review the results, explaining in detail to me what she had been searching for. (Leukemia, among other things. That’s how sick he appeared and how bad his symptoms were.)

She monitored my elimination diet with me, sent me to several different specialists, and analyzed their findings with me, often calling me at home to follow up.

Rex began to thrive — slowly. Unfortunately, every gain was met with some sort of setback because of his first four months of damage at the hands of a pediatrician and occupational therapist who wouldn’t listen.

By his first birthday, however, he had had consistent weight gain for about two months.

At one point in the process, Rex’s new pediatrician told me she hoped he would one day reach the 25th percentile for weight. He was sitting down in the single digits, and often falling backwards at the time. I thought the doctor was insane.

Yesterday, at his 18-month check-up, Rex measured in the 47th percentile.

FORTY-SEVENTH!

I was amazed, the nurse was amazed, the doctor was amazed. We can’t believe how far he’s come. Looking at him, nobody would ever know he was ever a starving, desperate, unhealthy baby. He is perfect, whole, and chunky — with fat to spare.

(We also found he apparently has a HUGE uvula, possibly the reason for his extreme vomiting? Sheesh.)

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It’s been months since I experienced the dread of the weight check; months since I felt despair every waking moment of the day. It’s been months since I saw the first pediatrician at the airport and wanted to vomit.

I thought I was fine.

I was beaming the whole way home from the pediatrician’s office yesterday, so happy at our wonderful news.

And then suddenly I was bawling, overcome by the horrible, horrible memories of last year. I wanted to simultaneously celebrate and crawl into bed to sleep the sadness away.

No mother should be so completely alone when her child is suffering — dying even. No mother should have her concerns brushed aside and ignored.

I realize this is a long and detailed post, but I wrote it to help someone. There’s someone out there going through what I went through. If you know her, share this.

Tongue-tie is real, and it does cause severe problems. Many doctors, including Rex’s first pediatrician, don’t take it seriously. Finding the right pediatrician who listens, no matter your child’s problem, is crucial. Don’t do what I did and spend two months with a pediatrician who makes you feel stupid. Fire him at the first sign he isn’t listening, and find someone who will.

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  • Linda January 24, 2016, 10:57 pm

    There is no one like Mama. Everyone else, get out of the way and help Mama.