Tongue Tie

Editor’s Note:

A shortened version of this article appeared in the Where What When print edition. Here is the complete article.

 I would like to thank the WWW for printing an article about infant tongue ties in the last issue. It was refreshing to see an article presenting the matter as a real issue and not a fad. As a mother who has personal experience with this, I feel that it is important for the readers, and the community as a whole, to know that, unfortunately, in many cases of infant tongue tie, parents go through a lot before getting the proper diagnosis and treatment for their babies. 

The article also said that babies with tongue tie will have an easier time with a bottle than at the breast. While that may often be the case – and does have a logical explanation – the reality is that babies with tongue ties can struggle with bottles as well, as was our experience. 

Almost exactly eight years ago, I was in an ENT’s office with both of my daughters, the older of whom had to come along for the ride. My younger daughter was approximately six weeks old at the time. We went to this ENT as per the suggestion of a lactation consultant who suggested that my infant daughter might have a tongue tie. She had experienced poor weight gain from day one, and I had to supplement with pumped breastmilk. This ENT attempted to describe to me how a tongue tie can affect breastfeeding, but I did not feel like he was describing my daughter at all. He then proceeded to check her and said she didn’t have a tongue tie but that she did have a lip tie but that they don’t affect breastfeeding. If only I had known that he was wrong about everything.

Over the four months that followed, the struggles continued. Our daughter was prescribed reflux medicine, and she struggled with bottles until she ultimately rejected them altogether. We were sent to a pediatric gastroenterologist (GI) who suggested that I mix formula (specifically Nutramigen) with pumped breastmilk and changed her reflux medicine. She said I should get back to her in two weeks. She also advised me to avoid dairy and soy. I continued to try different bottles, but nothing worked, other than what is known as a “dream feed” (when the baby is asleep), and even then it only happened once, and she didn’t consume a significant amount. 

After two weeks, I followed up with the GI to report my daughter’s weight gain (or lack thereof). The GI called me back and said she needed a supplemental feeding tube, which would require a hospital admission, and that it could not wait. Late the following afternoon, my baby was admitted to the Infant and Toddler care unit at Hopkins. We were discharged that Friday, which was erev Pesach. During our stay, no real attempt was made to figure out why my daughter couldn’t gain weight from oral feeds. I never saw a feeding therapist or lactation consultant. 

In the days after we returned home, it was a real struggle to get our daughter fed and to care for our three older kids. A few days after our return home, the hospital sent a home care occupational therapist, who helped me successfully reintroduce a bottle. After two visits, she felt her job was done. While my daughter was now able to take a bottle, finishing five ounces often took as long as an hour. She was evaluated by Infants and Toddlers, but she did not qualify for any services. So I continued to spend much of my time getting our daughter fed as I tried to care for our other kids, which was not easy. Children with poor weight gain are often monitored extremely closely, and the parents are under extreme pressure to feed their babies at all costs.

Nearly two months after my daughter was hospitalized, I realized I needed to do something. We had introduced solids after being given the green light, and while it was clear that my daughter wanted to eat, she couldn’t exactly swallow the contents on the spoon. I knew of a speech language pathologist in our area who specializes in feeding, and reached out to her. I had to call a few times, but finally she answered. I started giving her my daughter’s lengthy medical history. After a few minutes she stopped me. “Have you had her checked for a tongue tie?” I said yes, that we’d been to the ENT who said she didn’t have one. 

The feeding therapist went on to explain that everything I was describing was consistent with a tongue tie and that the ENT we had been to had a history of missing it. (Sadly, this is an issue all over the country.) She said my daughter was likely developing an oral aversion and that I needed to have the tongue tie released as soon as possible. She said that tongue ties can cause reflux as babies are ingesting air, whether they are feeding from the breast or bottle. I asked if I should go to a particular pediatric dentist I’d heard about, and she said yes. That was a Friday. The following Monday afternoon, my daughter and I were in the pediatric dentist’s office, where her tongue and lip ties were properly diagnosed and released. At that point she was seven-and-a-half months old. I didn’t see improvements immediately (which I now know is to be expected), but we were working closely with the feeding therapist. Soon after that, she did start taking solids. Just over two months after the procedure, her feeding tube was pulled out for the last time.

My daughter continued with feeding therapy for many weeks thereafter, but I wished I could do more. Bodywork was not as readily available in our area as it is today. There was no Kennedy-Kreiger TOTs clinic at the time, but even if there were, my daughter would have been too old, as they generally only serve babies through six months of age. I didn’t know that I could still see an IBCLC (International Board Certified Lactation Consultant), despite my daughter being “older.” Now I know that IBCLCs can be helpful at every stage of the feeding journey, not only with newborns.

Today, our daughter is a happy second grader, but I would be lying if I said we aren’t still recovering from the emotional toll of our misdiagnosis. I have spent the years since trying to learn as much as I can about TOTs and have been in touch with parents and professionals in and out of our area. Unfortunately, I am still hearing stories of parents who struggled to be taken seriously by their pediatricians and other professionals and had to go to great lengths to get proper diagnosis and the necessary care. There are way too many stories for anyone to think that what happened to us is just a fluke because doctors aren’t perfect. These families deserve better, and we need to try to do better. 

The unfortunate reality, however, is that most pediatricians, and even ENTs and dentists, as well as other professionals who care for babies, have not been properly taught about tongue ties during their formal training. The professionals who presently are respected in the field, all admit that they did not learn much in their formal training but, rather, sought it out themselves, often once they have experienced issues with their own babies.

Much has changed in the last few years. More release providers are strongly encouraging, if not requiring, a functional assessment from a properly trained IBCLC or feeding therapist, and possibly other preparatory measures, before the release. While this may seem like an inconvenience, it will actually help track progress and make sure that the baby (and the parents) are ready for the release. We could not do any of this for our daughter, but it was hard not really knowing what her tongue function was like before the release and I do wish we had been better prepared. Our situation was far from ideal, unfortunately. 

There are also now more resources and learning opportunities available for professionals (and really anyone) who wants to learn more. For anyone who wants to learn more about TOTs, I highly recommend the book Tongue Tied: How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More, by Dr. Richard Baxter, a pediatric dentist in Alabama, with contributions from various other professionals involved in addressing TOTs. It really does take a team, and multiple professionals have said that they see the best results when there is a team approach with proper care before and after the procedure.

I have several copies of this book that I would like to distribute to members of the community who would like to learn more. Please be in touch with me if you would like one. I also have put together a small library of other titles on the topic that anyone who would like to learn more may borrow. I would be more than happy to share more about my experience as well as additional resources with anyone who is interested in learning more. 

Not too long ago, the news was flooded with reports about the formula shortage. In our community, (and beyond), so many sprang into action to help to alleviate the anxiety of the families who had a challenging time obtain the formula that their babies relied on for nourishment. Our community’s efforts during that time were truly inspiring and heartwarming. There were flyers that said “You are not alone.” 

At the same time, as my husband and I learned through our struggle with our daughter, the availability of formula doesn’t guarantee that a baby can be properly fed. All the formula in the world would not have helped our daughter. Even if a tongue tie is identified early, the entire process can be daunting for a family, and they can often feel alone. This is all the more true when a family does not get a proper diagnosis immediately (and tongue ties are not the only infant cause of infant feeding challenges). The financial toll can be immense as well. Insurance does not always cover releases when they are done by the properly trained professionals. While the services at the TOTs clinic at KKI are generally covered by insurance, sometimes families (including but not limited to those with older infants) need to seek out the services of other professionals, for which they may need to pay out of pocket. The extra attention placed on the infant may be hard for the siblings, not unlike when there is any other type of illness in the family. Are we as a community there for the families so that they know that they are not alone?

To those of you who did offer your support and sensitivity during our daughter’s feeding struggles (you know who you are, I hope), we cannot thank you enough. May you continue to serve as an example of how to support families in these kinds of situations. To anyone who has a story similar to ours, I’m so sorry that you had to go through so much. You deserved better. Know that it is not your fault, and you are not alone. Baltimore has a reputation for being a community full of chesed, and I have no doubt that we can rise to the occasion to make sure that anyone who is dealing with serious issues in feeding their infants knows that they are not alone.