One little thing can cause big issues

Today, I am in the mood to talk about mouth ties. Tongue ties and upper lip ties are small little things. But they can create really big issues. And long term, they can become even bigger issues.

I have 5 kids, and 2 have a known mouth tie, 1 is suspected. That one is now an adult. But the youngest 2 kids have confirmed mouth ties. The fourth child has an upper lip tie that did not impede her ability to nurse till 14 months of age. I ended up with major vasospasms and had to stop due to pain lasting all day. I now believe that the tie + a growth spurt changed the mechanics of her mouth and latch, and my body didn't do well after that. I was ok with weaning at that point. Because upper lip ties (ULT) can cause speech problems, dental issues such as decay or orthodontia needs, we are monitoring her mouth over the long term.
The youngest is now 6 months old as of this blog post. But he and I had a rocky start. I was told in hospital that he had a tongue tie, but that it was minor. He had a champion latch, nursed well as far as we could see, and seemed to produce the requisite # of diapers typical of a newborn. Then we went home. He was a speedy exit, like #4, and he too was a bit jaundiced. The ped wanted to monitor the bilirubin levels, so we had to get labs drawn. Instead of leveling off or coming back down, #5's went up as the first week progressed. I was advised to try pediatric rehydration drinks, formula, pumped milk....but the baby refused anything but the breast. I dutifully pumped so I could do what I had to do to feed him, despite his refusal of any bottles. Meanwhile, we made about 5 or 6 lab visits in the first 2 weeks for bili checks. It was draining in every possible way, and if this had been my first child, it would have definitely painted my perspective of motherhood in the negative.

By day 10, my son was going through maybe 4-5 diapers a day, when the "norm" for newborns was almost twice that. He should have been having a poopy diaper at least every other day or so, not just a smear. His bilirubin should have been back down to what it was when he was born, not doubled that. I knew what the problem was, and was looking for a way to solve it. I was considering a laser revision with a local pediatric dentist who trained under Dr. Larry Kotlow.

That same day my friend took her 3 day old for frenectomy, and related my situation. I'd just gone to the lab that morning and our own ped at lunchtime for yet another round of the same. I was about ready to find a new ped over it for their not listening to me. My friend's pediatrician is also an IBCLC (highest level of schooling/certification a lactation consultant can attain), and helped with a UNICEF breastfeeding campaign in the 1980s. She told my friend, "tell her to get in here right now" because my supply was not going to hold out too much longer the way things were going. I high-tailed it to her pediatrician's office. While we had to wait, I decided to do a weighed feed. Weigh baby, feed baby, weigh baby again. Half an ounce in 10 minutes of feeding. A while later, we weighed, ped revised the tongue tie, I fed him for 10 minutes, and we weighed him. This time, a full ounce difference. Over the course of the weekend, he pooped 4 times in 3 days, peed through the "normal" number of diapers for a newborn and other things that made me sing.

He could move his tongue past his gums. YAY! look at those cute faces he makes now - and still does! My nipple was no longer flat, lipstick shaped, or in pain. And here's a biggie: He was able to empty the breast!!! Yes, he was getting full and I was getting emptied. I was no longer engorged and in pain from the backup it was causing. And then on Monday, just 3 days after revision, we went back to the lab and ped again for yet.another.draw. The phlebotemist was one of our previous foot-stickers and she said "oh my gosh, you have meat on your feet now! The blood draw was so much easier and faster versus the 10 minutes of screaming, squeezing, and scraping to get any drop of blood they could out of his tiny foot the previous week. The scale at the ped's office indicated he was up several ounces from that Friday. His color was getting better.

All that improvement over such short time, because one pair of sterile surgical scissors, 2 sterile cotton swabs, and a pediatrician with actual breastfeeding experience and knowledge made things right again. There's plenty of debate over circumcision versus remaining intact, and the thinking that leaving a mouth tie intact is on the same level as circumcision. But that's comparing apples to oranges. This is the ability to feed, nourish, and grow that is at stake. This is future issues with apnea from a high palate. This is potential for speech problems. This is potential for things like TMJ, neck and back issues. This is potential issues for the mom trying to feed her baby - mastitis, mangled nipples, breast pain, nipple pain, needing nipple shields, having to pump and feed vs nursing directly at the breast. Tongue ties are even related to acid reflux issues.

This is NOT an old wives tale.

Medical school barely spends time teaching about breastfeeding, much less anything that could interrupt that. A couple generations of formula feeding has drastically changed the landscape of medical training in regards to the art of feeding a baby the way nature designed. So, as such, women were told "oh your milk is bad" or "you're not making enough milk". And subsequently, babies were moved off the breast and onto a bottle. I don't know about my mother-in-law who was told this twice, but I could pump 4 ounces at a time that first week, which is more than a newborn would typically consume. The problem was not me, or parts of me. It was with that little frenulum being too attached under my son's tongue. My supply was never an issue. Again, had this been my first or maybe second, it would have stressed me out, and given me some emotional and mental scars. This was my FIFTH child, and as a veteran, I still had some emotional and mental hiccups over it despite my logical brain knowing what was happening and how to rectify it.

So, if you are in a position to provide medical or dental care, please, I BEG YOU, do not dismiss or minimize the presence of a mouth tie. Please reach out to other trained professionals such as Dr Larry Kotlow in New York, or Dr Bobby Ghaheri in Oregon for advice. Educate yourselves on breastfeeding, its mechanics and physiology for both baby and mother. Advocate for the mother and the baby. Don't just stick your gloved finger in baby's mouth and say "baby has a good strong suck, baby is fine." That tongue has to move milk from breast into the baby's mouth. It's not like a bottle nipple where sucking does the job of transfer. Don't take a wait and see approach. If we'd waited longer than 10 days, baby and I both would have suffered even more.

In the Breastfeeding group on one site, and a Tongue Tie Support group on another site, there are posts relating how the tie impacted the ability to feed a baby directly at the breast. On the Tongue Tie Support group, there are posts DAILY relating how frustrated parents endure doctor after doctor refusing to revise a lip or tongue tie because the doctor doesn't believe it has a negative impact. Or a doctor says it's an old wives' tale. Or a doctor blames a mother's supply. These doctors are pediatricians, general practitioners, ENTs, dentists and other well-trained people. They're all misinformed, and misunderstand. There are kids in speech therapy who are learning to make sounds close to the ones they're missing, when all they could potentially need is a revision to a mouth tie, a little retraining on how to use the tongue, and some time for the mouth to heal from the revision. There are newborns who can't or won't latch for several weeks and suddenly they get a little bigger and can get more of the breast into the mouth and figure out how to eat.

If you're in school for a medically related field, take up this topic in one of your research papers. Share it with your peers, educators, patients and friends. The only way for this to gain more respect or recognition is for other providers to share it. Many highly-educated people still attach a stigma to mothers as being uneducated or uninformed or misled. Mothers are in the trenches, and we've got battlefield medicine skills and experience that hasn't reached the books yet.

I have a friend whose 4 year old had challenges nursing as a newborn, and has been going to speech therapy, but still unable to rectify a set of sounds known to be related to mouth ties. She shared a picture of her child's mouth, and I told her that it looked to me that there is a tie present and she may want to explore that as a potential means to help her child's speech. She contacted Dr Kotlow, who indicated it seemed like a tie to him, and that the child might benefit from revision. She has a mix of relief that there is a solution, and sadness that the speech therapist hasn't connected the dots. How many more suffer without the benefit of knowing?

You can also use your preferred search engine to search for "tongue tie baby" or any similarly worded query and come away with a broad range of blog posts, support group forums, medical provider pages, and other information from well known medical facilities. My point here is that if you ever have a patient who is exhibiting the signs of a mouth tie, do not dismiss it!


Some helpful links:
Dr Lawrence Kotlow http://kiddsteeth.com
Dr Bobby Ghaheri http://www.drghaheri.com/about
Blog post on The Leaky Boob regarding mouth ties written by Dr Ghaheri & Melissa Cole, IBCLC that also has photos http://theleakyboob.com/tag/bobby-ghaheri/

Parental Wringers

Because of the speedy exit Mr Mambo#5 was jaundiced, just like his sister was. The muck didn't get squished to the southern exit. Apparently newblings need more than 20ish minutes being squished out of mama's nether-regions for that to happen.
And so began the incessant trips to the lab, back to the pediatrician, lather rinse repeat. He was also tongue-tied. The perinatologists and the pediatricians all said that it was minor. But it was indeed NOT something to be left unrevised here. In our case, baby boy could not extend his tongue far enough to pull milk out of the breast. He was always hungry, always nursing, always gassy and unhappy. He wasn't moving enough of the foremilk to get the fattier hindmilk that keeps him fuller longer. He was exhausting himself nursing all the time, trying to fill his little belly. I was pumping sufficient amounts of milk, probably more than he was moving out of there himself. Babies are supremely more efficient at transferring milk than a pump is. If I was able to pump 3 ounces from one breast with a nursing newborn, then something is definitely amiss.
Add to this scenario, twice a week lab checks, with ped follow up - and a 4 year old in tow. I was supposed to be recuperating. Pregnancy and childbirth takes a big physical toll on a woman's body. And I had a pediatrician's office not listening to me about the tongue tie being part of the problem. They kept suggesting the same things: supplement even an ounce of formula or give pedialyte, or pumped milk - anything to improve what he was taking in, so he could flush the bilirubin faster before it started posing more and major health problems. The problem was my child hated anything but the "gourmet groceries" as Mrs. A calls them. He would begrudgingly suffer a bottle of pumped milk - very reluctantly suffer it.
A friend was at her pediatrician's office, getting her son's tongue tie revised 3 days after he was born. She related our situation. The doctor told her to call us and get in there *NAO*. It was Friday, at 5:30 pm, and the pediatrician could have said "tell her to come in here next week." No, she said NOW. So, we hastily packed up everyone and left. My lil man was 10 days old, barely gaining, still jaundiced, and barely going through any diapers. Average is 10 diapers a day, but we were using maybe half that many.  We had to wait a while, and finally we got his tongue tie clipped. The pediatrician regularly does frenectomies, and understands the impact a tongue tie has on breastfeeding. I was about ready to take him to a pediatric dentist who would laser the tie, as trained by Dr Kotlow. But someone closer to home could do it, and covered with insurance and a copay. And she was insistent that I get to her office immediately, on a Friday evening, because my supply was at stake.
The first day after the revision, he was a little cranky and clingy, but that's to be expected. Then he started making up for lost time. He filled so many diapers over that weekend, and actually did more than a smear of poo. If he had a blowout diaper, I would've celebrated because it meant the bilirubin was moving out of his little body. Thankfully he didn't, but if he had, I would have cheered anyway. Diaper output immediately doubled. And then we had yet. another. follow-up. that Monday. He lost an ounce and the ped's office got all panicky. DUDE! He finally started producing diapers that were worth changing! Look at the whole picture here, will ya? I was supposed to go to a weight check on the Friday of his 3rd week, and I was exhausted. I refused to get in my mom-bus one. more. time. that week. My sanity, and that of my 4 year old needed to push pause on this incessant going places. Not to mention, the household budget needed a break from the fuel expenditure when I was not working to pay for said fuel, and copays.
I'd already had an appointment for the next Monday, so, really, I didn't feel a need to cater to the demands of the pediatrician's office when my sanity just was D.O.N.E.  and I needed to rest. This was not my first rodeo, and I felt safe staying home despite the objections of the nurses at the doctor's office. If mama is fried, the kids suffer. I learned that a long time ago. And I didn't care that they thought I was being neglectful. Yes, it's *just* a weight check. But to my 4 year old, it was yet another disruption this baby has caused her life, and making mommy impatient and cranky with her. She was devolving into a petulant, foot-dragging preschooler who was making mommy late for everything. We stayed home, and I napped on and off all day, with the little girl happily able to do what she wanted.
That next Monday, I had another ped appointment in the afternoon. I made them fax the lab order before my appointment, because I refused to spend my day waiting around and dealing with inefficient travels. I'd done this enough in the 3 weeks, I had a good gauge of the timing. Sure enough, he gained almost half a pound in a week, and the bilirubin was almost what it was when we left the hospital. No more wringers for us. We could resume a typical well-child check schedule.

And then 3 weeks later, for the well child check, Mr Mambo porked up an entire pound. No wonder I was losing circulation in my arms while holding him. Silly medical people, this mama is smarter than you think she is. Maybe you should listen more and wring her less.