My Story: Undiagnosed Tongue Tie

Written by the mother of twins: I wanted to start out by saying how thankful I am that there are professionals like yourselves who are willing to listen and advocate for parents and their children who have been severely impacted by ankyloglossia of the tongue and lip,and appears to be due primarily as a result of the current stance and response of the pediatric medical community on this matter. Specifically, there is refusal by some to recognize this as a serious medical diagnosis, by downplaying its role in health issues that parents ask about as a possible cause, especially if all other causes have been ruled out. These medical issues primarily involve feeding and speech. In feeding, breastfeeding is often problematic and made to stop so the baby switches to bottles, and in more severe cases, bottles cannot even be used (such as in my twins), so there are numerous reports of babies and children who rely on nasogastricor gastrostomy tubes for nutrition, and the worrisome problems that comes with feeding from an NG tube at home (which can be dangerous, if not done properly) so the parents must be dutiful that the hired help is performing the procedure correctly at all hours of the day. The constant reliance on nurses and tubes getting in the way of gross movement can limit their activity as babies and thereby can cause significant delays in their development. Then, as a parent you are on your own to get your babies off tubes, because often if the ankyloglossia is not resolved as early as it should have been, intense bottle aversion and tube dependency can result, which then, if parents are savvy enough to find, they can hire expensive tube weaning programs to help them. We used Spectrum Pediatrics therapy to help us with the aversion, which was a great help. The worst possibility out of all of this is not being able to eat in toddlerhood/childhood, which is an unfortunate reality of some families I have spoken with. In speech, it can cause significant delays in speech issues, as lip and tongue ties can very well inhibit a child from correct pronunciation, thereby affecting their performance in school and engaging in conversation with their peers, and in some cases, can really affect their self-worth to an extent that the problems become psychological issues, of which are of the most critically challenging conditions to overcome in childhood. SIDS has also been highlighted recently as a critical medical issue that can exacerbated by untreated ankyloglossia, as recent research has reported that SIDS has been found to be significantly correlated to the presence of ankyloglossia in infants.

The pediatric medical community are also less likely to refer family to the relevant professionals, who are not only trained on how to properly diagnose and treat all types of ties (there are many categories and grades involved), but have the notoriety necessary to be affiliated with the following organization–The International Affiliation of Tongue and Lip Tie Professionals (IATP), which is the leading organization of professionals, of which many members are at the forefront of raising public awareness of ankyloglossia in babies and children through education(websites, books, and published articles). Some are so intensively dedicated to the matter and want to help families, that many will offer to review pictures sent by parents who suspicious of ankyloglossia, and although they cannot give an official diagnosis to the parents, they will give the parents some indication of where to go to get proper confirmation and treatment.

My story is as follows: my twin fraternal girls, were born at 34 weeks due to preterm labor (2/12/18) at healthy weights of 6 pounces, 7 oz (Kiera Anne Campbell,Baby A) and 5 pounds (Dana Elizabeth Campbell, Baby B). They were born needing some oxygen support and treatment for jaundice typically seen in 34 weekers, so they soon recovered after about a week and a half in ICU, taken off CPAP in less than a few days, and were quickly transferred to the feeders and growers to learn to feed via bottle. However, in my girls, feeding via bottle was attempted in the feeder and grower’s unit 12 days post birth to almost 3 months with very little success, perhaps 20-30% at best was taken from a bottle in the first month. The primary doctor who treated them through most of their stay chalked their feeding difficulties to pre-maturity, and said it can take up to 44 weeks for hunger centers to develop in the brain. This explanation at first kept our hopes up that we would start to see improvement around this time. However, the terrible feeding treatment they received at the NICU was obviously affecting the twins, and the observations I saw of hunger cues starting to develop, along with the doctor’s and their perceived lack of interested to quickly find the cause as to why our twins couldn’t feed from a bottle started to make us very suspicious of the quality of the treatment our twins were receiving there. Such examples of their feeding protocol that treatment that make me wince in pain was how the nurses routinely forced bottles into their mouths, and did not allow the babies hardly any time to burp properly—bottle feeding time was restricted to only 20 minutes (plus or minus a few minutes) before the nurses forced the feed to stop and gave the rest of the formula through the NG tube. We were ordered to follow this protocol as well. My husband and I have no doubt in our minds that the staff contributed significantly to their feeding aversion due to these very strict guidelines and refusal to allow us to try different methods to get them to eat, such as use a special needs bottle, to which they said no. I started seeing hunger cues earlier than the nurses, 39 weeks or so. Yet the bottle feeding continued to struggle. They would fall asleep at the bottle, had poor suck skills, pouring milk out of their mouth as they fed, hyper gag reflex, the milk always seemed to overwhelm them.

I asked the doctor about tongue ties at around 38 weeks, he replied saying ties don’t affect bottle-feeding. Dr. Kotlow had told me via email that severity of ties, particularly posterior ties, do not just breastfeeding, but bottle-feeding too, and this is a long-standing myth that many pediatric doctors and professionals commonly believe are accurate based on my conversations with our twins’ medical team in the NICU and also in their pediatrician office after discharge. Other resources on TT professional pages also are in agreement with Dr Kotlow. I asked the speech Language therapist at the same time, and she said NO ties where present. We were told the oral motor function is the problem and it should be a light bulb moment and happens in 95 percent of infants by 44 weeks, so we were instructed to wait. Swallow study done at 44 weeks (at my behest, they finally submitted to doing the swallow study after ignoring my requests in the past), and the results showed no swallowing issues in Dana, but for Keira showed a cough aspiration (posterior ties can do this, and Keira had a much worse one than Dana). The NICU doctors defense as to why this test was not performed before, was that aspiration was never suspected because their monitors have never alarmed (no alarms since February 24th). Brain MRI and genetics screening came back clear.

It was finally at this point, that they finally allowed us to use slow flow ultra-preemie Dr Brown bottles, but the nurses wanted to let me know that they wouldn’t work before I even tried the bottle. This lack of encouragement did not help, and the bottle did nothing. They showed lots of reflux with vomiting and have to be held up after they fed, but staff/doctors GI consult did not believe their issues were GI related. But they put them on Zantac anyway, even after the primary doctor specifically wanted to stay clear of Zantac because of adverse effects that can occur. They were on it for a few weeks, and no changes in feeding occurred after being put on Zantac. I spoke with Dr Kotlow and he advised us to take them off Zantac ASAP because of the detriment this medication can cause (as our primary NICU doctor had said) and it wasn’t doing anything. I made this request, to which they agreed, but then made the recommendation at 45 weeks send them both home on g-tubes, because they still weren’t finishing their bottles consecutively and not at the required 80% per feed.

Meanwhile, I continued to witness my girls’ rooting and show hunger all the time but we couldn’t feed them on cue in the NICU. When they did take the bottle, they lasted about 10min and were very tired. Volumes range from 5-60 mls a feed. Not consistent. They may have benefited from more frequent feeds, but again we had no control in the NICU. They tended to take higher volumes at night because they were sleepy. They did gag very easily still, and they were very colicky because their suck suction is not the best which allows air to be gulped in. In spite of all this, their weights at 45 weeks were considered very good, (baby A,Kiera 11 lbs), and (Baby B, Dana almost 9 lbs), and weight hasn’t been the primary reason NG tube supplementation was always administered, as they were big at birth as twins (I did not have gestational diabetes).

But due to the g-tube recommendation and the unresolved TOTs diagnosis, I did not trust the NICU, and so I posted a final plea on a local twin mom group about my issue, and a mother with twins responded that she had the same exact issues and knew without a doubt it was lip and tongue tie. All of this is exactly what occurred with her twin girls (at the same hospital, her twins were born, it wasn’t caught there at the hospital, and although they were not in NICU, her pediatrician refused to acknowledge TOTs and she had to syringe feed her babies at home for almost a year) and the ties weren’t discovered till she saw TT professional Dr. Rashita Jaju in Northern VA.

That Tuesday (4 days prior to g-tube surgery), I glanced at the tongues of them both and saw milk residue on their tongues, then I noticed calluses on their upper lips, so I asked my husband to take pictures of their tongues and both were heart shaped. We showed the babies doctor and he immediately called for ENT consult. Later that day I asked LC to come in and she found lip and tongue ties. She felt restriction in both tongues and wrote her report. I have video tape of her exams and her verbal shock over it not being caught earlier. She was shocked speech didn’t see this. ENT finally came 4 days later and called me on cell phone, to which he said there was nothing surgically he can do for them, and I asked why, he said he couldn’t find any tongue frenulums’ to cut. When I asked if he saw any membranes underneath the tongue that might be harder to observe than an anterior tie (posterior type), he didn’t seem to understand what I was asking him, but he recommended going to a pediatric dentist for a second opinion. He didn’t know of Kotlow’s classification system, nor did he name any one he was using. He didn’t take pictures either and it appeared examined the twins on his own, which is not how to appropriately diagnoses TOTs. We did not trust his diagnosis.

I then went to Dr. Kotlow’s website to properly take pictures with my twin friend Lily who had tongue tied girls, and I sent them to three well known tongue tie professionals (see pictures below) and they replied to me with their personal suspicions that the lip and tongue ties were not only present, but look to be severe enough to be causing feeding issues and possible GERD issues. I discussed my findings with our NICU doctor, and he seemed bored with my conversation with him, and looked at me as if I were grasping at straws, so to speak (the medical notes do not exactly word it this way, but the idea is conveyed if you were to read them).

However, even though he had never given us the option in our entire stay to go home on NG tubes, as in his opinion, g-tubes are safer, after our TOTs suspicion, he allowed us to go home on NG tubes with Medicaid night nurses. The speech pathologist again reiterated her response that was given to me earlier in their NICU stay, of which she decided to do this again on our day of discharge (!), of which we did not ask for her presence, as we already knew what she thought of the TOTs issue, and said it was simply ‘her opinion’ that the feeding issues were not due to TOTs. Discharge was May 8, 2018

At three weeks post discharge we went to see Dr James Ryan and had frenectomies done, and he was so blown away by the severity of the posterior tongue and lip ties that he wrote a note on our behalf that the prolonged NICU stay was due to the un-diagnosed TOTs. GERD symptoms immediately went away, but we had to work on the bottle aversion with a tube weaning program, the pediatrician, and the Medicaid nurses at night and baby nurses during the day.

We did the exercises religiously, we paid attention to refusal cues and did a very gradual NG wean at night with pediatrician and tube wean supervision to get them on the bottle, first starting with the Medela Special Needs Bottle (cleft palate babies use these bottles typically). It worked, on June 27th, the tubes came out (see pictures), and they grew out of the special need’s bottles, and started used the Lansinoh momma bottles, and started with slow flow. We started using exclusively fast flow in September.

Now at almost 10 months unadjusted, we are happy to report that they are baby led weaning and eating well! Broccoli and lentils and all sorts of good stuff.