A Personal Reflection
This is a story of my son, Hayes. This story is not a sob story. For all intents and purposes, Hayes is a happy, typically developing, and I might add “fat” baby. The point of this story is to bring to light the experiences a mother and her newborn might face and the resources (or lack of) that are available.
It started with a scheduled c-section. Our baby (Hayes) was transverse, breech, and sunny-side up. The worst position. His head was up into my ribs, cocked, I imagine, at a dramatic angle for most of the pregnancy. At my thirty-something week appointment, the doctor could not find his head with the ultrasound. The consensus was that he probably at a weird angle, folded over. Oh well. No big deal. The doctor was not concerned. With a scheduled c-section, his position didn’t matter anyways.
I thought about Hayes’s vestibular system. I doubted that it would be developed as it should be without being in a head-down position. I told myself (and was told) that there were tons of babies who were breech and turned out fine. No big deal.
After Hayes was born, he was fine. My milk had come in early and he was chugging it down. Every few hours a lactation consultant came into our hospital room and watched me nurse. “Any issues with breastfeeding?” they asked. “None,” I replied. They told me it looked good. No worries. No concerns. They left. Hayes looked fat. The lactation consultants were impressed. “You’re a pro,” one said to me. I felt proud. I had no concerns. They had no concerns. Breastfeeding felt easy. I had an easy baby. We were discharged from the hospital in two days. Fantastic.
Week 2. Week 3. Week 4.
Hayes was fine. He was fussy, had reflux, ate constantly, had a hard time latching, but he was OK. No big deal.
I normalized Hayes’s behavior. He was fine. He was unhappy for much of his awake time, but that seemed normal. That was his normal. He ate every two hours – normal. As he gasped for air and chugged milk – normal. He could not sleep on his back – normal. No big deal.
I thought about the number of mothers who experienced this. Discharged from the hospital. A few weeks went by and their child has difficulty feeding. Not a lot of difficulty, but some. There is reflux, gassiness, fussiness, poor sleeping, refusal to lie down, chugging milk, clicking tongue, gasping for air, pulling off his latch, eating in short spurts. No big deal. Perhaps it was all part of being a baby.
Normalized and dismissed. Hayes was not fussy enough to be described as cholic. After all, the lactation consultants had been impressed and the pediatrician had no concerns. Everyone was happy with his weight gain. When he wasn’t gassy, he was content. When he wasn’t crying, he was engaged and even smiled. He was eating. He was sleeping for two to three hours at a time. Nothing was great, but nothing was terrible. “He has the potential to be a good sleeper; he seems like he has an easy-going personality,” I said. No big deal.
I brought him to our craniosacral therapist. I had made this appointment before Hayes was born knowing that he was a scheduled c-section. I knew that his head would not be squeezed through the vaginal canal. I knew that getting him out of my body through an opening in my stomach would put stress on his neck. I knew that it would be a traumatic experience for him. I had prepared myself with this appointment.
The craniosacral therapist adjusted his cranial bones and atlas. Hayes seemed happier. He could turn his head more freely. I stopped feeling like I was wrestling a wild animal to get him to nurse. Things were easier. No big deal.
Hayes’s sucking pattern seemed to get worse. I thought that perhaps he was just a sort of happy, sort of unhappy baby. Feeding him seemed to become more difficult. He hated to be on his back and had severe reflux for hours after eating. He was fussy and gassy. He gasped to breathe as he nursed and wriggled around constantly. I thought the problem was me; I changed my diet. I changed feeding positions. I held him more. It really was not a big deal. I continued with the daily struggles as any mother would.
Then it was brought to my attention that Hayes’ nursing behavior was not normal. My response was, “I do feel like I’m wrestling a wild animal to get him to eat.” Of course, that was kind of a big deal. It was certainly not a “no big deal.” My child should not struggle to nurse. I was asked if Hayes had been evaluated for a lip tie. I didn’t know what that was. I had requested a tongue tie evaluation in the hospital and there were no concerns. What was a lip tie? Luckily, I had a few dental and orthodontic connections. I took a picture of his lip and sent it around. Responses came in: yes, a lip tie. The frenulum (the piece of skin) that attaches from the lip to the top of the gum was thick and attached to the bottom of his gum lime. This limited the movement of his upper lip and ultimately limited the quality of his latch. I looked closely and yes, there was air leaking in at the sides of his mouth as he ate. He could actually barely latch and fell off after a few sucks.
I guess this wasn’t normal. I guess my child shouldn’t be this fussy. I guess this was a deal. Within a day, I was at the ENT to clip his frenulum. I was happy that I had solved the problem. I was proud once again. I continued with the daily struggles of motherhood.
Hayes was no longer sucking in air through the corners of his mouth. He was not as gassy, but I felt like he didn’t know how to use his tongue. He didn’t seem to automatically coordinate his suck-swallow-breathe pattern. He would suck, suck, swallow, suck, then pull off and gasp. I noticed that he did not stick his tongue out of his mouth. I noticed that he did not open his mouth widely. He could open it, but it seemed like something was restricting this movement. He could turn his head to both sides, but he seemed uncomfortable when he turned his head to the right. Little things; things I barely noticed.
I made an appointment with our partnered chiropractor. There had to be a reason why he wasn’t turning his head to the right. There had to be a reason why he is not opening his mouth. A real reason. Hayes’s atlas was off of alignment. A day or two after this adjustment, Hayes was finally able to get his suck-breath-swallow pattern down. Perhaps it had slipped back out of alignment due to his frequent head butts onto my collarbone. Eating seemed easier for him. He was more relaxed. Happier. Not as fussy. He didn’t seem to be in pain. As he relaxed, I relaxed. No one else saw this. But I noticed.
I made an appointment with a pediatric feeding specialist. She confirmed that he was not using his tongue to suck. He was chomping instead. She told me that “it’s weird that his tongue is not moving.” I felt like this was a completely unhelpful statement, she was the expert, so I nodded. She gave him a torticollis diagnosis; a biased head movement to one side. No specific recommendations on how to help or why this had happened. She gave me ten oral motor exercises. General exercises. I was grateful, but I felt like these exercises were not individualized to my child or to my routine or to my limited time.
I could do maybe two of the exercises. I told my husband about them, but I could not remember the details. I was tired and had a limited memory due to lack of sleep. I could not explain them. I remembered three of the exercises and did these automatically. Fuck the rest of them. I didn’t even remember why I was doing them. After all, nothing with Hayes was a big deal.
My husband told me Hayes would be fine. I agreed. Everyone told me he would be fine. Only a few people paid attention when I brought up these “issues.” He probably would be fine. I thought about his future. A time when these struggles might come to fruition. Maybe in five years he would receive a diagnosis like ADHD. Maybe, maybe not. I felt sad. I had brought an imperfect child into the world. A child already needed help. I worried I had missed my window to do something or maybe I had not done enough.
Hayes’s feeding was improving. He was starting to stick out his tongue. His reflux was decreasing. He could tolerate being on his back without gagging. He was still tucking his lip as he fed, but he was no longer sucking in air.
Ifs only I could get him to open his mouth and really learn how to suck using the entirety of his tongue. I joined a tummy time class given by a pediatric occupational therapist. I mentioned that I felt like Hayes could not open his mouth all the way. She felt around his mouth, specifically between his cheeks and bottom gums. Cranial neve dysfuction. Buccal tie. Of course. It made sense.
In utero, Hayes was lying transverse. His head was turned, I assume, for most of the pregnancy. As he developed, this position limited the innervation of the cranial nerve to the tongue, cheeks, lips. This was why Hayes didn’t know how to use his tongue; his cranial nerve had never fully innervated these structures. He also had a buccal tie, which was limiting how far he could open his mouth. Using my fingers, I could easily feel this.
Tummy time. Suck training. Tummy time in a way that worked. Things were improving. I knew how to help him. I felt better knowing what his issue was and how to fix it.
But. I thought about how many times this happens to mothers. The baby might not be head-down during pregnancy. The mother is stressed. When her baby is born, he cries. She notices something is maybe not quite right, but she normalizes it. No big deal. The people around her are unconcerned. Dismissive, perhaps. The baby is gaining weight. This child grows up with a subluxated atlas and a cranial nerve that never fully innervates the tongue; the child is unable to move his lip appropriately. The child is fussy and so is held more often. Primitive reflexes are not integrated because tummy time is a battle. What could this result in? A neurotypical child? Maybe, maybe not.
I think about how we (as occupational therapists) should offer education and support to mothers through pregnancy and the first year of their child’s life. Maybe we can go beyond what we currently do by providing emotional support to mothers and developmental classes to their children. Developmental check-ups.
Regardless of what we are able to do, I believe that we should not let mothers and their newborns slip through the cracks; slip through a crack that could easily be stood on and eventually walked on. An easy fix, it seems.
We will see.