The Long Referral, Part 1 :: Advocating for My Tongue-Tie Baby
My son’s tongue tie was missed when he was born. He was my first child; I didn’t know how to identify one or what it looked like, and my understanding of what it could affect was limited. I trusted that the people checking him in those first hours were catching what needed to be caught.
When Something Gets Missed
It was his pediatrician who finally noticed it. We were told tongue ties are not always treated and that the biggest concern at his age was whether the tie was affecting feeding. Since he could take a bottle and continue gaining weight, it seemed like something we would simply monitor.
Over the next few well-baby visits, I found myself paying closer attention. When my son cried or lifted his tongue, it seemed restricted in a way I couldn’t ignore. He was also having difficulty latching, and I had read enough about tongue tie and breastfeeding to know that restricted movement could make nursing harder than it needed to be. Although he could take a bottle and continue gaining weight, I had hoped to breastfeed longer than I was able to. During his two-month well-baby visit, I brought those concerns to his pediatrician. We talked about the tongue tie and what steps might be available if it was contributing to the feeding challenges, and she referred us to a pediatric ENT.
The Appointment That Left Me with More Questions
I went into the ENT appointment expecting clarity and next steps. The tongue tie was identified and classified as moderate, but because my son could take a bottle and continue gaining weight, there was no recommendation for intervention. My concerns about tongue tie and breastfeeding did not seem to carry the same weight. There was no referral to a lactation specialist and no discussion about additional support. I also asked whether the tongue-tie could contribute to a speech delay down the road. Even then, as an educator with a general understanding of language development, I wondered whether his tongue tie might become an issue over time. I was told that speech was not something they would address at that age and that any concerns would be evaluated later if they arose.
I left feeling dismissed. I was a new mother raising concerns about a two-month-old baby, and no one seemed to think there was a reason to worry. So, I stopped pushing… for the moment.
For a while, life moved forward. My son continued meeting many of his milestones. He said his first words around six months old, and there were no major concerns that seemed urgent enough to send us back down the referral path. Still, there were small things that stayed in the back of my mind. He seemed to strain when trying to say certain words, and as he got older, it felt like language was not coming as easily as I expected. I could not point to one dramatic moment. It was simply a growing sense that I should keep paying attention.
When One Tie Became Two
At his first dental appointment after he turned one year old, another piece of the puzzle emerged. The pediatric dentist identified a lip tie. It was the first time anyone had mentioned it. Not the pediatrician. Not the ENT. Just like that, we went from one oral tie to two.
The dentist was not overly concerned and recommended monitoring his development rather than pursuing a procedure. She even shared stories about her own children developing at different rates. While I appreciated the reassurance, I left with more questions than answers. Once again, I found myself keeping track of information that had not been fully carried from one specialist to the next.
What Navigating Specialist Referrals Taught Me
Looking back, what stands out most is not the tongue-tie or the lip-tie. It is how many times I found myself wondering whether I was seeing something none of the doctors seemed concerned about. I was not a specialist. I was not looking for a diagnosis. I was simply paying attention to my child.
Along the way, I also learned something some parents discover for themselves: no one specialist sees everything. Each appointment offered another piece of information, another perspective, and another recommendation. It became my responsibility to remember what had been said, what had been missed, and what questions remained.
Sometimes reassurance and answers are not the same thing. More than once, I left an appointment feeling reassured while still carrying questions that had not been fully resolved.
If there is one thing I would tell other parents navigating a tongue tie diagnosis or any other early concern, it is this: your observations matter. You spend more time with your child than anyone else. Even when the answers are unclear, there is value in paying attention, asking questions, and trusting what you see.
I did not know it then, but the referrals, the waiting, and the search for answers were only beginning.
Next in the series: Searching for a Speech Therapist
