I Fell Down the Rabbit Hole

When I was asked to write a blog about tongue-tie, diagnosis, and frenectomy… I went “all medical”. I thoroughly compiled a list of symptoms, explained who diagnoses and why it can be so difficult to assess for posterior ties. I laid out all of the current evidenced-based standards and professional consensus from the tongue-tie community. Focusing on the science is easy for me. But I said everything except for the most painful part – which is how I stumbled, tripped and fell into working with tongue-tied babies. And when that story was requested, I cried. I cried like every mother of a tongue-tied baby has ever cried. Because it’s always raw, that story. No matter how many moms and babies I help, I will always hold that feeling of utter helplessness somewhere at bay in my heart. Perhaps you know that feeling.

My son Samuel was born during the Boston Marathon Bombing. Between that terrible tragedy and my 66 1/2 hour labor followed by a cesarean, I should have had some sense of foreboding for what was to come. I was blissfully unaware, never suspecting that his asynclitic presentation and my prolonged labor could be related to movement restrictions of my newborn. But my bliss ended on the first night – baby Sam cried INCESSANTLY. I simply couldn’t put him down. I remember at one point looking at my husband, both of us with wide eyes, staring down the freight train of impending overwhelm. But there were no words. Martin went to sleep, and I did the one thing I wasn’t supposed to do. I co-slept in the hospital bed, pretending for every nurse that came in to scold me that I’d been awake feeding him. That pattern of co-sleeping continued for every nap and nighttime for two years, because he simply could not sleep on his own (and wouldn’t until he was 22 months old). And I can’t even begin to tell you all the criticism I got for it. Family, friends… everyone thought I was ruining my baby. It’s a funny thing, looking back in hindsight, to a community blaming a mother for what the medical community failed to address.

Breastfeeding seemed to go well, I thought. Sure, I got mastitis several times and constantly had engorgement and plugged ducts. I always had this lingering feeling that he wasn’t getting enough, and he would fall asleep at the breast like it was his job. He could never take more than 3 ounces from a bottle, and my babysitter’s updates would often leave me panicking home from work, hair on fire to feed my baby. But Sam’s weight gain was GREAT, so the pediatrician never even considered referring us to a lactation consultation. But Sam was MISERABLE. Even my mother, a veteran mother of three who tandem nursed twins, was at a total loss, and even suggested bringing him to the ER once. He would cry so hard and for so long that all I could do was hold him and bounce on an exercise ball – for HOURS. I would try the white noise of the shower, I would sing through tears, I tried it ALL. I had concerns about colic, but was told that it’s normal for babies to cry. You see, by now I’d already pissed off my pediatrician. I’d asked too many questions. I had too many concerns. I knew I’d been labeled a paranoid first-time mother, or worse, a hypochondriac. Sam’s colic started when he was 5-weeks-old, and it lasted until he was 7-months-old. I will always regret that it took me so long to ignore the pediatrician and begin to listen to my instincts, because by ignoring my instincts, I was prolonging my son’s discomfort and pain.

After months of sleepless, distraught nights, his GI symptoms calmed down a bit… but it took cutting out onions, garlic, coffee, dairy, chocolate, and a few more items from my diet that I can’t even remember. And for a celiac with a limited diet to begin with, it was no small feat. Eating became a chore, and there was very little enjoyment. Those days were just a blur of miserable. And gas drops. Oye.

I knew something just wasn’t right. I’d pick up newborn baby Sam, and hear his joints adjust. He seemed actually to be in pain; and no one knows how to read signs of physical discomfort quite as adeptly as a massage therapist – or a mother for that matter. Sam had strange positional preferences, like he just came out twisted. It was bad enough that the pediatrician opted to rule out spina bifida and hip dysplasia. As a structural bodyworker with [then] 12 years of experience treating acute and chronic pain, I knew enough to know what I didn’t know. So my pediatric bodywork training began. I took him for chiropractic adjustments. I took him for different types of bodywork. We saw several highly trained craniosacral therapists, and that did help with his cranial molding – which was, in hindsight, undiagnosed plagiocephaly. But he never seemed to be able to sustain changes from the bodywork. I couldn’t understand why his tension patterns kept returning a few days to a week after each session. The pedi just shrugged and called it “stink-eye.” I still have some forgiveness work to do.

But his sleep? Oh, no, that didn’t improve until the golden 22nd month. You see, my craniosacral therapist, Sue Cotta, had encouraged me to try inversion for Sam. And one day, I was out in the sunshine, a naked 15-month-old Sam in my arms, upside down and backwards… and from that bizarre perspective, I noticed this strange little piece of tissue under his lip. I knew nothing about maxillary ties, but I knew two things: 1) The pediatrician would not give me the time of day, and 2) I knew how to Google. So, off I went on the beginning of my journey, discovering about ankyloglossia and it’s many impacts: on digestion, on sleep, on postural and cranial development. I was in AWE. And I knew in that moment, this was the answer that I had been looking for, all along. But it was far from over.

After research that would do my medical librarian of a mother proud, I brought Sam in to see Marty Kaplan, a pediatric dentist specializing in tongue-tie. He confirmed a lip-tie, but we had such a difficult time getting into Sam’s mouth (because he already had oral aversions) that we couldn’t determine whether tongue-tie was the issue. Marty played it safe and recommended that I first meet with a GI doc to rule out other organic GI causes, so off we went again. The pediatric gastroenterologist was kind, but it didn’t do much good. She wanted to do an upper GI, and I was far too nervous of a mother by then. She did test Sam for lactose intolerance, but it was negative and the conclusion was that he had a milk protein sensitivity – which I had long since figured out on my own. After several months of unsuccessful Omeprazole use, attempting to treat his reflux, she recommended the sleep specialists at Hasbro. So off we went down another rabbit-hole. By now I just thought I was nuts. And probably was, clinically, given the severity of sleep deprivation. My husband really didn’t do nighttime wakings. After all, he had airway compromises and sleep dysfunction of his own. After 4 months of gentle sleep-training, Sam was still waking up screaming bloody murder at all hours of the night. I demanded a sleep study. The results showed some apneic and hypopnic events, but not enough to qualify as apnea. After 7 months of chasing “organic causes”, I finally realized that my local pediatric hospital experts fell short of any answers, and were content to keep “following up” with no conclusion. We revisited Marty Kaplan, and tried the only thing there was left to try – frenectomy. And lo and behold, Sam started to sleep for longer and longer periods of time. He still had sensitivities to certain foods in my breastmilk, but the reflux seemed to calm – HE began to calm. He began to be able to sleep without waking up screaming. He habitually woke, but the lambs had apparently stopped screaming, because he would find his way to mommy’s bed and calmly cuddle up. He was a different toddler altogether.

Somewhere through this process of hard knocks, I connected with a bodyworker on a tongue tie support group. I had posted about an epiphany I’d had at work. I was treating an adult client one day who had a complex history: neck pain, and cervical degeneration, TMJD, headaches, and cranial nerve issues. Our work just never gave her more than a few days of relief, and her rebound tension reminded me so much of my son’s. And then I realized while doing a craniosacral hold, looking upside down and backwards at her, that she was TONGUE-TIED! And the more I paid attention to my “difficult” chronic pain clients, the more I saw patterns of oral dysfunction, airway compromise, sleep apnea, and more – all associated with tongue-tie and sleep-disordered breathing. So I shared my realization on a tongue-tie support group. One blessed woman sent me a message and recommended that I join the Ankyloglossia Bodyworkers, a professional forum run by Michelle Emanuel, a pediatric occupational therapist specializing in tongue-tie who teaches and lectures around the country. The AB group is a multidisciplinary group of professionals who treat tongue-tied babies: occupational therapists, chiropractors, osteopaths, craniosacral therapists, speech language pathologists, and licensed massage therapists such as myself. I couldn’t help but notice all of the posts, requesting professional referrals in different areas around the country. I asked an important question that would completely change the course of my career. “If WE can’t even find each other, how are PARENTS supposed to figure out how to find these valuable resources?” Michelle replied that she had many plans, including creating a provider list. When I asked how I could help, she asked me how motivated I was. And if you haven’t glossed over this blog, you could guess my answer. We started building www.ankyloglossiabodyworkers.com and I have been partnered with, training with, and mentoring under Michelle closely ever since.

That wasn’t the end of Sam’s tongue-tie journey, if you’re still wondering. There was speech therapy and occupational therapy, Myobrace treatment, a revision, and oral-motor consultations to help to optimize his hard palate development and oral function. And Sam is fine, better than fine. He’s healthy, and growing strong. He is an incredibly kind little boy with a heart of gold who’d rather ask Santa Claus for a gift for his mom than one for himself. But he’s still tongue-tied. He will always be tongue-tied. Because everything that I’ve learned has convinced me of one thing – we are arrogant to think that clipping a tiny piece of tissue will change an ingrained embryological malformation that happened at 7 weeks gestation – when my now 4 1/2 foot tall son was the size of a gummy bear. We have optimized, and optimized, and optimized his tongue function until the only remnant left behind is a high palate, dental crowding that puts him at risk for dental caries, and some borderline sleep-disordered breathing. He’ll need orthodontics and palate expansion, but I’m ok with that because it’s more training that I can put to use for the good of others.

You see, I’ve fallen down the rabbit-hole to greet other mothers such as yourself. I have been there and will not let you feel alone or uncared for. I will not convince you that your instincts are paranoid delusions. I will not be aloof or judge you for your choices governed by the need to simply SURVIVE it all. I will mourn with you for the loss of your expectations, the loss of your “perfect” idealized baby, the loss of your sleep, the loss of breastfeeding if that is what it has come to for you. I will GET you in the hot mess of grief and post-partum depression. And I am committed to helping you find the resources I struggled so hard to cultivate.

So, you’ll learn very little from this story about what you should do to have tongue-tie diagnosed, and who you should reach out to for support, because that wasn’t part of my personal journey. Sam and I were alone in our struggles like thousands of other moms and babies. 5-11% is a pretty statistically significant number, after all. I often wonder how many never figure it out, and I see ties everywhere. But I was ready for my second tongue-tied baby boy, and I will be there to help you be ready for yours. Now, where are my tissues?

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