Is it a tongue-tie?

By Renata Nehme, RDH, BSDH, COM®

It was my first baby, a little girl. I was overjoyed, overwhelmed with emotion and so excited to build a beautiful breastfeeding relationship with her. I read all of the books, took a breastfeeding class, and even roughed up and prepared my nipples. I purchased ointments, a pump, a breastfeeding pillow, and everything else a new mom believes she will need. I had a breeched baby and a scheduled C-Section.  The baby was put on my chest in the recovery room about 25 minutes or so after she was born. “There you go, let’s nurse her,” I thought. But Zoe couldn’t latch very well. Although I felt a pinch every time she was feeding, I had heard that most moms have pain with breastfeeding (even though I learned that wasn’t normal). The first night was rough. She cried nonstop all night long. Thankfully my mom was with me and we just kept taking turns holding my crying baby. She didn’t seem comfortable. I kept trying to nurse but she would suck some and cry hysterically. As morning approached, I decided to try different positions, and finally found one that she seemed to like; she ate and fell asleep. The next morning, we called the hospital’s lactation consultant. I made sure to ask if she was an “IBCLC” (International Board-Certified Lactation Consultant) since they go through rigorous training, testing, and licensing. This sweet lady examined Zoe and assured me she had no oral ties and for us to work on positioning.

After going home, the troubles just continued. My nipple pain was unbearable. I cried more than she did every time we had to nurse.  I was applying lanolin around the clock, letting my nipples breathe, but nothing helped. I finally called another IBCLC to come to my house. The lady came in, held my baby, and with a gloved finger she checked her sucking strength. But I don’t remember her checking for oral ties at all. She proceeded to tell me that the baby did not like my let down. The solution was to lay down flat and let gravity do its job. I don’t know why but I never questioned anything.

Zoe would start crying every night at 9pm. She would cry until midnight, sometimes 1am. My mom kept saying: “She’s still hungry! Just give her some formula, honey.” I kept checking and there was so much milk coming out. There was no way this baby wasn’t getting enough. She never took a pacifier, and as a dental hygienist I was happy about that. It never even occurred to me that there was a reason she couldn’t hold a pacifier and therefore never took to it. This went on for 6 months. I heard it all: it’s colic; the witching hour; it’s gas; eliminate dairy… All I wanted was a happy baby – the kind that eats and sleeps! Zoe would not sleep in her crib for longer than 45 minutes. On two occasions she choked so badly on milk while she was nursing that I had to suck milk from her nose so she could breathe again. Car rides were a nightmare. She screamed the whole time in her car seat.

At six months her primary caregiver, my mom, moved back to Brazil.  Zoe would not take the bottle from anyone after that. Our nanny had to spoon feed her milk when I wasn’t around. Thankfully she was already old enough and we began giving her food. I bought a baby blender and started making her food from scratch at home. I was so proud. Her belly didn’t accept food well and little did I know, I wasn’t supposed to blend her food. A couple of months in, I heard about baby-led weaning, so we gave it a try. She did fairly well but was a picky eater when it came to textures. Bananas and mashed potatoes were a no-go because of the consistency.

I’m telling you our story because now I know how common it is for some moms and babies to have these issues. But they are not normal. With the proper team of health professionals, Zoe would have started therapy immediately after birth. The fact that she was a breeched baby would have been enough of a reason for her to have received bodywork afterwards. She would have gotten a lip- and a tongue-tie release accompanied by craniosacral therapy and stretches. When the upper lip is restricted, a baby cannot form a proper seal around the mom’s nipple causing them to swallow air. The nipple keeps sliding out which makes the baby bite down to try to keep it inside the mouth, causing the mom to have painful, cracked nipples. Zoe had a posterior tongue tie which prevented the tongue from fully extending under the nipple to remove milk effectively. As she got older, we saw other signs that her development was not ideal – bags under the eyes, clumsiness, crawling on one knee only (which we thought was the cutest thing). Zoe also showed some additional sensory processing issues; she hated tags on clothes and couldn’t tolerate wearing socks. Since she was extremely intelligent, had a great memory and spoke two languages early on, we didn’t focus on what she couldn’t do. Instead, we praised all her accomplishments. When she finally lost her two lower teeth, I noticed she was not going to have enough room for her permanent teeth – another sign that she had not grown to her full potential.

After becoming a Certified Orofacial Myologist, I started connecting the dots and trying to figure out ways to help her. That’s when we encountered the next obstacle. Finding the appropriately trained professionals in my area who were able to see what I was seeing seemed almost impossible. Dentists, orthodontists, ENTs, and pediatricians around me all said she was fine. There was nothing wrong with her. “She will grow out of it” was the most common response I got after voicing any of my concerns. As a result of the challenges, I faced as a mother, last year I founded a group called Airway Circle and started building a directory of professionals who are well trained in airway issues, oral ties, and myofunctional disorders. To date, we have helped people all over the world. I will not stop sharing our story in the hopes of preventing another mom and baby from going through the same struggles that we did.

Zoe is seven years old today and we are still working to get her facial development back on track. We recently started palatal expansion with a wonderful orthodontist, and craniosacral therapy for additional support as her palate and teeth move. We still have our daily struggles with feeding, sensory issues, and proper tongue positioning, but her breathing and sleep have improved greatly since we began our journey.

I encourage you to find your “team” before your baby is born. Be prepared in case you need it. Sometimes it can take a village. Find a support group of parents going through the same thing as you are. Interview your providers to make sure they are well aware of these issues. Ask about their approach to treatment and success rate. Way too many mothers end their breast-feeding relationship prematurely because they are unaware that they can be helped. I hope my story inspires you to keep seeking answers for your children. Always go with your gut – a mother’s intuition is always right.