On January 31, 2011, my baby was born 7 1/2 weeks premature. Isaiah spent three weeks in the Neonatal Intensive Care Unit (NICU). While he grew and made tentative first attempts at breastfeeding, I pumped to bring in my milk supply. What a supply it was! I soon made enough milk to fill a freezer– much more than Isaiah needed. This oversupply continued to affect our nursing relationship for many months.
In these first few months, little warning flags kept popping up that something was wrong, though I didn’t yet know what that something was. Isaiah couldn’t hold a pacifier in his mouth. A few sucks and it fell right out. When he cried, his tongue didn’t elevate. After nursing, my nipples were shaped like a lipstick and blanched white. Shortly after getting home, Isaiah developed reflux. He spat up after just about every meal and seemed just miserable with gas. We tend to see spit up as just a normal part of babyhood in our culture, but just because something is common doesn’t mean it is normal.
About two months after Isaiah was born, I was flipping through The Baby Book by Dr. Sears and randomly read about tongue-tie. I looked in Isaiah’s mouth and saw a very clear tie going right to the tip of his tongue, which was heart shaped. This began our year long struggle with tongue tie. We talked to so many health care professionals. Unfortunately, most are not up to date on current symptoms, diagnosis, treatment, and long term effects of tongue tie.
At Isaiah’s next appointment with his doctor, I asked her about the tie. She looked and confirmed that it was tied. Because of his prematurity, we were already clients at the breastfeeding clinic at a local hospital. His doctor recommended that we go back there to get it clipped. I called the clinic and asked for an appointment. They asked me if I was having breastfeeding difficulty. I was just happy to have enough milk and be exclusively breastfeeding a preemie, so I said, “no.” They refused to give me an appointment. Isaiah’s doctor said that the next course of action would be to wait to see if it would impact his speech later, at which point she would refer to a plastic surgeon.
At the next La Leche League meeting, I asked a leader to look under Isaiah’s tongue. They don’t normally do this, but she affirmed my feelings and said it looked like he could have a tie and was concerned enough about it to spur me to action. I was having some nipple pain, which seemed to come and go. I called the breastfeeding clinic and asked for an appointment (without giving a reason). By the time of the appointment, Isaiah was four months old. The doctor was not pleased about being asked to clip the tie. She said the baby was too old for a revision and had grown too many blood vessels under his tongue. She asked, “Is it really affecting you that much?” Feeling guilty to be putting my child through pain just for me to feel more comfortable, I said, “Yes, please do the procedure.” I have since learned that there are MANY reasons to get a tie revised, for the mother, but ESPECIALLY for the baby! I have also learned that people are never too young to get a tie revised. In fact, my partner just went in to get his tie revised. He is looking forward to getting rid of TMJ symptoms, to licking ice cream cones without pain, and to not stumbling over words.
After the doctor clipped Isaiah’s tongue, he was given to me to nurse. The lactation consultant said that it should feel immediately better. It didn’t. Furthermore, I could still see his frenulum under his tongue. The doctor had barely clipped it at all. While it is possible to revise a tie properly with scissors, most commonly, practitioners do not cut far enough. They end up turning an anterior tie into a posterior tie.
As I learned more, I had experienced and knowledgeable friends check Isaiah’s tongue. One friend ran her finger across the bottom of Isaiah’s mouth at his second molars. She felt a tight frenulum in the middle, like a piano string. The revision was not done far enough. Furthermore, I was not given any stretching exercises to do afterward to make sure it did not grow back together (which tissue naturally will try to do).
Back we went to the breastfeeding clinic. The lactation consultant said that he was too old (now almost six months) and had too many blood vessels under his tongue. The doctor would not revise it any more.
By this time, we were exhausted with the issue. Often, tongue-tied babies are not able to bring in a milk supply, so they can suffer from poor weight gain. Because some mothers have oversupply, some tongue-tied babies will be nice and chubby. We are learning that poor maternal gut health (leaky gut) can present as oversupply and tongue-tied babies. This makes a nice pairing: babies who cannot latch well don’t have to work very hard to have milk pouring down their mouth. These babies might gain weight well, but will often sputter and gasp at the breast and present with reflux and gassiness. Because of my oversupply, Isaiah was gaining weight well. With no help in sight, I decided that I could deal with the nipple pain and forget about looking for someone to fix his tongue tie.
At eight months, Isaiah’s adjusted age was six months, so we started solids. We used the baby led weaning approach, where we presented family food for him to self feed. Isaiah quickly developed great fine motor skills and seemed to enjoy a wide range of food. By ten months, he could pick up a grain of rice and get it to his mouth. However, he wasn’t able to swallow much of anything. Sometimes he loaded his mouth completely full, then became upset and needed help to clear his mouth. Most food was pushed straight back out without being chewed or swallowed. At eleven months, after a bout of croup, he stopped eating much of anything. He continued to play with food, but didn’t swallow anything. His poop clearly showed that he was almost exclusively breastfed. I was tired of being patient waiting for him to develop the skills to eat. He had almost stopped gaining weight since starting solids and had lost all his nice chubby rolls. He had dark circles under his eyes and didn’t seem as strong. After hitting milestones early, he was becoming late in learning new things. After getting two front teeth, nursing was becoming more and more painful. After nursing, I always had two little teeth indentations above my nipple. I knew that things were not going well and something needed to change.
Around that time, I read a blog post that changed everything. It was a story of another mother who had struggled with finding help with tongue-tie and lip-tie. After reading this story, I looked in Isaiah’s mouth and saw a clear lip-tie. It was thickly tied all the way to the gum line and underneath the gum to the palate. Lip-ties are underdiagnosed by health care professionals. I have since spent many hours reading what the IBCLCs who are experts on tongue-tie are saying on the Tongue Tie Babies Support group on Facebook. They almost unanimously say that they have never seen a lip-tie without a tongue-tie or vice versa. If one is present, you can be sure that the other one is as well. Isaiah was not only struggling with solid food, but it was clear that he would also have a space between his front teeth if we didn’t get it fixed. Lip and tongue-ties are also a culprit in early tooth decay. We learned that the very best way to revise lip and tongue ties is in a dentist’s office with a laser.
We made an appointment at a local dentist, who had recently worked on a few babies’ lip-ties. He was willing to revise his lip tie, but did not think that the tongue was a problem. We knew that both needed revision. After a year of waiting and wondering, we were ready for action. From the blog post, we knew that Dr. Kotlow, in Albany, NY, was the leading expert in pediatric revision in North America. We booked a ticket and left three weeks later.
We were lucky enough to be reimbursed for the revision and travel expenses through my partner’s health care spending account at work. The procedure took less than five minutes, and Isaiah came back to me whimpering a bit. Later that day, we went for lunch, and immediately saw an improvement in his ability to move food to the back of his mouth and swallow! We started stretching and massaging the wounds the next day to prevent reattachment. We also took Isaiah to a chiropractor and for cranial sacral therapy (CST). Both are recommended within 48 hours of the procedure. When a baby is tongue-tied, they compensate with other muscles, which can cause all sorts of imbalances in structure. Isaiah needed lots of follow up appointments with a friendly chiropractor to be aligned the way he should be. We also saw an IBCLC to help Isaiah learn to breastfeed with a deeper latch.
Unfortunately, two weeks after the revision, Isaiah got very sick with Respiratory Syncytalial Virus (RSV). We learned that he was severely anemic (due to being a preemie, premature cord clamping, and not getting iron from solids because of his tongue-tie). After getting a bit better, he came down with croup and an ear infection. His immune system was just overwhelmed. With everything else on my plate, I stopped doing the stretches to keep his wound open while it healed. Combined with that, he didn’t really heal properly until his anemia was treated. The good thing was that, after about a month and a half, he was much healthier than he had been in months. He had tons of energy and was growing again, though still slowly. The bad thing was that he was just not doing as well with solids as I had hoped. Things were still being pushed out of his mouth instead of being swallowed. I looked in his mouth, and saw that there was significant reattachment of both the lip and the tongue-tie. I was able to push both open partially, which is what Dr. Kotlow advised me to do if this happened. This was as unpleasant as it sounds. I started to do the stretches again.
It soon became clear that it was just not enough. When Isaiah was 15 months old, I took a webinar about gut health and breastfeeding. It became clear to me that both Isaiah and myself had significant gut health problems. As a family, we cut out all grains, dairy, and legumes from our diet. We added lots of probiotic foods and some homeopathic/natural gut healing remedies. It was always unclear as to why Isaiah was premature. I now believe that it was caused indirectly by my gut health. Isaiah’s tongue and lip tie are also indicators of my gut trouble. We all feel much better already. However, I worried that Isaiah would never really have a healthy gut while he continued to have a tongue tie.
Three months to the day from the last revision, Isaiah and I made the long flight back to Albany to have his tongue and lip revised again. This time, I was prepared. Isaiah had been on an immune booster for months, and his iron levels were back at a normal level. I had Rescue Remedy, a homeopathic trauma remedy that was more effective than Tylenol in dealing with pain from the revision. Isaiah had chiropractic treatments and craniosacral therapy (CST) appointments before and after the procedure. Many experts now are recommending bodywork also be done before the revision. They believe that it helps to loosen the tight muscles, which reveals the whole tie. If bodywork is not done before the revision, it is possible that more of the tie will come to the surface afterwards, which may necessitate a second revision.
I also changed how I did the stretches. It is much more effective to have the baby’s head in your lap than to have his feet pointing at your stomach. After the first revision, we were so desperate to prevent reattachment that we stretched six times a day. It was incredibly traumatic for all of us and probably contributed to increased scar tissue growth. No wonder we weren’t able to keep it up when Isaiah got sick! After the second revision, we now do the stretches twice a day really well. We do lots of mimicking tongue play throughout the day to try to encourage him to use his tongue in new ways. We gently massage his face and mouth so that most of the touching he gets on his mouth throughout the day is soft and gentle, not traumatic.
So far, we have had great results. It is recommended that you complete the stretches for about two weeks after the revision until the site heals. We aren’t taking any chances this time! We continue to stretch the site a month afterwards, at least once per day. Isaiah is finally eating! As long as the food I feed him is soft and in small pieces, he is able to swallow it. He really enjoys eating and is filling out nicely. I am also finally comfortable nursing him. He is starting to talk much more and is doing new things every day. He seems fascinated with what he can do with his tongue. He even stuck it out to a point the other day. His front teeth have grown together, and his smile has changed for the better.
I feel like we are finally on the right track! Everything we did was worth it.
Tongue and lip ties are very common. Among my friends and at LLL meetings, I see babies all the time with tongue and lip ties. There are no easy answers as to where to go to get help right now in Alberta. Thanks to a lot of work by a local mama with a similar story to ours, Dr. Kotlow will be coming to Edmonton on August 25th to do a presentation for Health Care Professionals about tongue and lip ties. Talk to your local doctors, nurses, lactation consultants, and dentists and urge them to attend. Hopefully, future babies will not have to struggle like ours did. Babies will be so much better off when more people are able to assess and treat tongue ties in Alberta.
If you want to know more about tongue ties, check out the following resources:
Kiddsteeth.com (I especially like this article by Dr. Kotlow: http://www.kiddsteeth.com/nursingbookaugfc2011.pdf)