Tongue-Tied Twins

Kiera and Dana

Kiera and Dana, my twin fraternal girls, were born at 34 weeks at the healthy weights of 6lbs 7oz, and 5lbs. They both needed some oxygen support and jaundice treatment, which is typical in 34-weekers, but they recovered quickly. After about a week and a half they were transferred to feeders and growers to learn to bottle feed.

poor treatment in the NICU

Unfortunately, bottle feeding from 12 days to almost 3 months was mostly unsuccessful—perhaps 20-30% was taken from the bottle in the first month. Their primary doctor chalked it up to being preemies, saying that it can take up to 44 weeks for hunger centers in the brain to develop. This kept our hopes up that we’d eventually see some improvement.

However, the terrible feeding treatment the twins received in the NICU was obviously affecting them. I watched as they began to display hunger cues, but the doctors seemed uninterested in finding out why the twins couldn’t bottle feed, and we started to become suspicious of the quality of care they were receiving.

In the NICU, I watched as nurses forced bottles into the babies’ mouths, gave them very little time to burp, and cut off feedings strictly at the 20-minute mark to administer the remainder through the NG tube. We were ordered to follow this protocol as well, and all suggestions to attempt different methods were refused, including the use of a special-needs bottle. My husband and I have no doubt this strict protocol contributed to the twins’ feeding aversion.

So, we continued to struggle under the enforced protocol. The twins would fall asleep at the bottle and had poor sucking skills, milk pouring out of their mouths as they fed. Their gag reflex seemed hyper-sensitive, and milk always seemed to overwhelm them.

tongue-ties to blame?

I asked the doctor about tongue ties at around 38 weeks. His reply was that ties don’t affect bottle-feeding. However, Dr. Kotlow told me via email that this is a long-standing myth that many pediatric doctors and professionals commonly believe, but that severe ties—particularly posterior ties—don’t just affect breastfeeding, but bottle-feeding too.

“[The idea that ties don’t affect bottle feeding] is a long-standing myth that pediatric doctors and professionals commonly believe.”

We also asked the speech language therapist, who said no ties were present. It was simply a matter of oral motor function, and it would all “click” by 44 weeks, as it does with 95 percent of infants. So, we had to wait.

At 44 weeks, they did a swallow study (at my behest, after ignoring several past requests). Dana had no swallowing issues, according to the test, but Keira had a cough aspiration—something that a posterior tie can cause. The NICU doctor’s defense as to why they’d never agreed to the test before was that aspiration was never suspected because their monitors had never alarmed.

Experiments with Slow-flow and Zantac

At this point, they finally allowed us to try using slow-flow, ultra-preemie Dr. Brown bottles, but the nurses told me it wouldn’t work even before I tried. The lack of encouragement didn’t help, and the bottle did nothing. The twins showed lots of reflux with vomiting, and had to be held up after they fed—but the GI consult didn’t believe the issues were GI-related. Regardless, the twins were placed on Zantac anyway, despite the possible adverse effects. After a few weeks of no change, Dr. Kotlow advised us to take them off Zantac ASAP. As it wasn’t doing anything helpful anyway, the NICU doctors agreed, but made the recommendation at 45 weeks to send the twins hom on G-tubes, because they still weren’t finishing bottles consecutively at the required 80% per feed.

help from a fellow mom

Due to the G-tube recommendation, and the unresolved TOTs (tethered oral tissues) diagnosis, I didn’t trust the NICU. I posted a final plea on a local twin-mom group about my issue, and another mother of twins responded. She said my experience sounded almost exactly like her own—her twin girls were born at the same hospital, had lip- and tongue-ties that were not caught in the hospital, and although they were not in the NICU, their pediatrician refused to acknowledge TOTs. She ended up having to syringe-feed her babies at home for almost a year. The ties weren’t discovered until she saw a tongue-tie professional, Dr. Rashia Jaju, in Northern Virginia.

countdown to G-tube surgery

Four days prior to the twins’ scheduled G-tube surgery, I glanced at both twins’ tongues and saw milk residue. I also noticed calluses on their upper lips, which is typical of babies with lip-ties. I then had my husband take pictures of their tongues, and we realized that both were heart-shaped from the tension of their tongue-ties pulling on the lingual tissue. We showed all the evidence to the doctor, and he called for an ENT (ear, nose and throat) consult. Later that day, I asked a lactation consultant to come in, and she immediately diagnosed lip and tongue ties. She felt restriction in both tongues, and wrote her report. I have video of her exams, and her verbal shock that their condition had not been caught earlier.

no help from ent or nicu doctor

Four days later, ENT finally came to examine the twins, and told me he couldn’t do anything for them surgically, because there were no frenulum present for him to cut. I asked him about posterior ties, which are more difficult to observe than an anterior tie, and he didn’t seem to understand what I was asking, nor was he familiar with Kotlow’s TOT classification system. He recommended going to a pediatric dentist for a second opinion, which I was happy to do, as I wasn’t confident in his diagnosis.

We took some proper pictures of the twins’ tongues with the help of my twin-mom friend Lily, who also had tongue-tied girls, and sent the pictures to three well-known tongue-tie specialists. They all replied with their suspicions that lip- and tongue-ties were not only present, they looked severe enough to be causing feeding problems and likely also the GERD issues the twins were experiencing.

I discussed my findings with our NICU doctor, who seemed bored with my conversation with him, and looked at me as though I were grasping at straws. He’d never given us the option to take the twins home on NG tubes (nasogastric tubes, which do not require surgery.) In his opinion, G-tubes were a safer option. However, after our conversation he allowed us to go home on NG tubes with the help of Medicaid night nurses. On the day of our discharge, the speech pathologist arrived (uninvited) to reiterate to us that she did not believe TOTs were present, and were not responsible for the twins’ feeding issues. At this point, we had no faith in her professional opinion or diagnosis.

tie-revision at last

At three weeks post discharge, we went to see Dr. James Ryan and had the twins’ lip and tongue ties revised. He was so blown away by the severity of the lip- and posterior tongue-ties that he wrote a note on our behalf stating that the prolonged NICU stay was due to the undiagnosed TOTs.

After revision, the twins’ GERD symptoms were gone immediately, but we had weeks of hard work ahead of us trying to reverse their bottle aversion with a tube weaning program. We did the lip and tongue exercises religiously, paid attention to refusal cues, and did a very gradual NG wean to get them on the bottle. We started first with the Medela Special Needs Bottle (typically used for babies with cleft palate). It worked! The tubes came out less than two months after discharge from the hospital. They grew out of the special needs bottles, and started on the Lansinoh Momma Bottles with slow-flow at first, graduating to fast flow four months after discharge.

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.

my final thoughts

I am so grateful that there are professionals like Melanie that are willing to listen and advocate for parents and their children impacted by TOTs—something that is desperately needed, given the current stance and response of the pediatric medical community on this matter.

There is a refusal by some professionals to recognize this as a serious medical diagnosis. As a result, a lot of families are experiencing problems with breastfeeding, or in severe cases—such as with my twins—they can’t even bottle feed. This is resulting in families like ours having to undergo the stress and trauma of tube-feeding for nutrition, with all its attendant risks. The constant reliance on nurses and tubes getting in the way of gross movement can limit babies’ activity and cause significant developmental delays.

Then, as a parent, it’s up to you to get the babies off tubes—because often there is some intense bottle aversion and tube dependency. Tube-weaning programs are expensive and not always accessible to all families.

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, affecting their school performance and social development—which then can overflow into longstanding emotional and psychological issues. SIDS (Sudden Infant Death Syndrome) has also been highlighted recently as a critical medical issue that can exacerbated by untreated TOTs, as recent research has reported that SIDS has been found to be significantly correlated to the presence of TOTs in infants.

The International Affiliation of Tongue and Lip Tie Professionals (IATP) is the leading organization of professionals educated in TOTs. Many members of this organization are at the forefront of raising public awareness of TOTs in babies and children through 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 TOTs, 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.

Baby Bonds is a Boise-based company that serves mothers with lactation support specializing in tongue tie. If you’re interested in learning more, you can find our contact information here.