Getting the word out: Tongue Tie and the MTHFR Gene

Yes, I’m going there. I’m tackling the tongue tie and all that goes with it (usually lip tie, narrow/deep/high arched palate, upper lip tie, receding chin). Please be advised that I am not an expert on this subject, nor should my post replace medical and/or dental advice if your baby or child is in fact tongue tied. I’m just another mom who found that her baby had this, and you know what they say. A worried mother does better research than the FBI. Or something to that effect. Anywho. Let’s Begin.

After Ramzi’s birth, He latched with what seemed like very little difficulty, although from the moment he did latch, it felt kind of odd and too tender–but what did I know? He was my first baby, and I’d only ever learned what to say to new moms about breastfeeding. “You might be sore for the first few weeks. But if it HURTS, somethings wrong.” was one.  Please, someone tell me WTF the difference is between “sore” and “hurts”. Let me help you. YOU CAN’T. Why? because pain is subjective. I have a pretty high pain tolerance. Which is why when Ramzi latched on and literally crushed my poor nipples flat and caused vasospasms (read about them here: http://kellymom.com/bf/concerns/mother/nipple-blanching/), I thought it was painful, really painful, but maybe I was just sore? He didn’t appear to click, but he did pop off a lot, have wicked gas pain, curled in his bottom lip, and never stuck his tongue out past his bottom lip. Also, he was born 7lbs 2oz and by day 3, he was 6lbs 3oz. For those of you who know about weight loss in the postpartum period, you know this is too much. For those of you who don’t, babies usually lose a bit of weight in the first few days of life, but usually its around 7%, (no more than 10), and they are back up to their birth weight by 2 weeks of age. Ramzi lost 15% of his body weight, and he was severely jaundiced. Eventually, he got back up to his birth weight at 4 weeks of age.

I knew the moment I heard his weight that something was wrong. My mom encouraged me to consult with a lactation consultant, because the pediatrician wasn’t helping at all. Most pediatricians are completely clueless and think tongue and lip tie cannot affect breastfeeding. But they aren’t trained very well in breastfeeding, so if your pediatrician ever tells you that, seek a second opinion. Hell, seek a 3rd and 4th opinion if you need to. If your baby isn’t gaining weight, and breastfeeding hurts to high heaven and your poor nipples look like tubes of lipstick, its worth a trip to the right lactation consultant, dentist, or ENT. Also, you can find support at : https://www.facebook.com/groups/tonguetiebabies/.

Ramzi had his tongue clipped by an ENT at 3 weeks old. By then I was already pumping regularly to supplement him, since that was the only way my boobs were going to be emptied, and the only way he was going to gain weight. The ENT wasn’t really super supportive but he clipped it a little anyway. A little. Not enough. And it reattached. My LC recommended a dentist in Sudbury, MA, outside of Boston, so I then took him to her (her website is here: http://www.concorddentistma.com/Sudbury-Dentist-Tongue-Tied.asp.). She was AMAZING.  She was knowledgable about tongue tie and explained everything in detail. She used a laser for his tongue a lip ties. I did the exercises several times a day. He hated them, but I did them. Again, it reattached. So, I continued to pump and try to keep him latching on in the hopes that he would improve. I was pumping my life away. Literally. Every hour to 2 hours I would pump. I used an SNS for a short while but in my mind, I wanted to save my nipples from damage. I would have hated to damage them long term, thus ruining my breastfeeding relationships with my other children. And due to a host of other gut/digestive/and health issues, I switched Ramzi to a specialized formula but continued to comfort nurse him, which hurt, but whatever. At 3 months, I stopped pumping and stopped giving him breastmilk. The bottle was easier for him, and the formula helped his digestive issues, which were causing him severe pain. I also added two different probiotics to continue to colonize his gut with good bacteria.

I think tongue ties account for some portion of breastfeeding difficulties. And if medical professionals aren’t educated on tongue or even aware that it exists, they can’t help breastfeeding mothers overcome it. I don’t care what my pediatrician says. A baby who cannot stick his tongue out past his lip CANNNOT effectively trasnfer milk, nor can he suck correctly to stimulate milk supply, which is why I had to take a prescription medication, along with fenugreek, mothers milk tea, more milk plus capsules and tincture to get my supply up at all. And even then it wasn’t great. Hopefully, if you’re reading this and your baby has tongue tie, I’ve armed you with enough insight and information to go to your provider and DEMAND an exam or a referral. Please also visit: http://www.kiddsteeth.com/articles/websitettlnbew.pdf  for some good information and photos, as well as http://www.cwgenna.com/quickhelp.html.  Just some symptoms that your baby may be tongue tied are:

  • Narrow latch
  • Painful when baby latches on
  • vasospasms
  • “lipstick” nipple with a white ridge going across it
  • baby continues to fall off of breast and cannot stay latched by themselves
  • gas pain
  • reflux
  • baby swallows a lot of air
  • poor weight gain (although not all tongue tied babies have poor weight gain)
  • baby cannot stick tongue out past bottom lip
  • top lip curls under and cannot stay phlanged out
  • baby falls asleep at the breast and wakes up hungry soon after
  • tongue does not touch roof of mouth
  • tongue curls at the sides when baby cries

Fast forward.  Ramzi gets lasered AGAIN around 5 months. Although he is no longer breastfeeding, tongue tie and lip tie can still cause issues with reflux, gas, speech, and oral development.  Lip ties can cause large gaps in between teeth and tooth decay. A baby who is tongue tied may have speech impairments or trouble eating solid food. Tongue tie also prevents the tongue from resting against the palate properly, thus cause the palate to remain/become deep and narrow, as opposed to the normal wide and shallow. Palate shape can affect the room available for teeth to move and come in. Ramzi will probably need a palate expander and braces when he is older. So, there are A LOT more reasons to try to correct tongue tie than just breastfeeding. But salvaging a breastfeeding relationship is a pretty darn good one. Did I also mention that Ramzi’s dad also has a tongue tie? Yes!! He has always told me how he cannot stick his tongue out very far, how he swallowed a lot of air as child, has terrible reflux, and it hurts to move his tongue too much. Fancy that. This is where it gets even MORE complicated.

What causes tongue tie? Well, tongue tie may be considered a midline defect. It’s cousins and/or close friends are celft lip/palate and spina bifida to name just a few.  A lack of adequate folic acid may contribute to it. Genetics may also be a factor. Anyone heard of the MTHFR gene (more info here: http://ghr.nlm.nih.gov/gene/MTHFR) ? I’m convinced both David and I have it. A baby with the MTHFR gene may also have more issues with tongue ties reattaching as well, though don’t quote me on that. Basically, this gene mutation causes the individual with it to have trouble processing amino acids and B vitamins–specially, folic acid/folate. Without this, you can take as many prenatal vitamins or folic acid as you like, eat fortified bread until you turn into a giant loaf of sourdough, but you will NEVER have enough. You will not be able to convert folic acid into 5-methyltetrahydrofolate, which is what it needs to do to absorb it. This mutation can also cause a host of other issues (see here: http://mthfr.webs.com and here: http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/ ), which is why its worth it to get tested if you suspect this may be a problem.

Tongue tie is ALWAYS worth investigating if you or someone you know if having breastfeeding difficulties and the baby exhibits some or all of the symptoms above. And you’ll be happy you did, not only for your breastfeeding relationship, but for your baby’s future health. I know learning all of this was terrifying for me as a new mother, but now, I am armed with a lot of experience and information, so that when baby # 2 comes around, if he or she has this issue too, I will know exactly what to do and how to do it.

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Blizzard Baby: The Birth of Ramzi Bell

Ramzi’s due date was calculated as February 23, 2013, which was spot on, since I knew approximately when I conceived. Despite this, in the later part of my pregnancy, I knew, just KNEW, that he would arrive well before that. Not early, not late, just on his own time. I just felt like he was the kind of baby who did things his own way and wanted to come sooner rather than later. I got a lot of unsolicited advice and comments like “Oh, you’ll go late, its your first time.” And I maintained that I would not. Not because I wanted him to born at any specific time, but because I knew what would happen. Call it mother’s intuition.

The week of February 9th, when the blizzard Nemo would be hitting us, my friend Emelia took me on a walk in the mall on February 6th. I hadn’t been feeling much that week with the exception of some light cramps now and then, and I had lost my mucous plug the week before. During the walk, as I was waddling a long, I felt him drop. Literally. He dropped his little head right onto my cervix. I felt more pressure and my pelvis felt sore. Later, Emelia dropped me off at home and looked sidelong at me. She said “Girl, you aren’t going to make it to next week. The next time I see you, you’ll have a baby.” I went about my day as usual, and either on Wednesday or Thursday, I got acupuncture from my acupuncturist (aka my husband). I had been uncomfortable and waking up constantly, but Wednesday night and Thursday, I slept and napped GREAT. And once again, Emelia had told me I would. She said, “When you wake up feeling refreshed, you’re going to have a baby.” This girl is very wise.

We went to bed Thursday night, but I only slept a few hours. I woke up around 2:30am with some uncomfortable period-like cramps. It was dark, and the wind outside was howling. There was some snow on the ground. The discomfort was mostly in my back. I tried to shift, to walk around, to use the heating pad like I had done before, but these cramps weren’t going away. So I called my midwife, Teresa, and let her know. I told her I was going to take a shower. If the cramps continued on after a warm shower, then I knew I was probably in labor.

So, I get out of the shower–and the cramps intensify. Woot! I text my mom and David starts blowing up the birth tub with his mouth–yes, the giant birth tub. I said to him “David, you aren’t going to get much done that way.” And He said, “I can do it if I want, okay?” I think he was just nervous or excited and he wanted to be helpful. My mom was scheduled to come on the 15th. I had mentioned to her before that I thought the baby may not make it until then and she said, “Really, that early???” Yep. This is one efficient baby.

So I was just chillin on my birth ball at 3am, breathing through contractions, having some tea and yogurt. Although the pain in my back was uncomfortable, it was nothing I couldn’t handle. David and I continued to hang out and talk and then I called Bethany and Lauren around 6am and told them what was what. They both (I think) said to call them when I needed them. I said, “Oh, it’ll be a while, I’m fine….”. Around 8am, things started to pick up, and I decided to call them both again and I said, “I need you now. Please come!”

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So Bethany and Lauren were over around 9am I believe. They stayed with me, helped me with the pain in my back, got me drinks, held my hands while David took care of some business stuff. He had to call his clients to cancel and let them know we were having a baby! At around 11am, Teresa called to check in and I told her I wanted her there so she was on her way. At this point, nearly 10 hours in, Things were feeling more intense and I wanted Susi, my other midwife, there too. She arrived shortly after, I think, but this is where some of my memory gets foggy. By this time I was definitely in labor land. I needed constant pressure and movement. If no one was pressing on my back, I was on the birth ball or swaying my hips or in a hot shower. The pain in my back and sacrum was intense. The birth tub was ok for a while, but I really needed to MOVE all the time and I felt confined in it so I was always getting in and getting out. Right about now some of you midwives, doulas and birth junkies are probably thinking it: yep, back labor. The dreaded back labor.

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By around 5pm, I was begging for it to be over. This would be…around 15 hours in. I kept looking at everyone and saying “I want to be done. Seriously. I want to be done.” At one point, I cornered David when we were in the shower and said “I’m serious. I want to go to the hospital.” I wasn’t, of course, serious. After about an hour or so of complaining, I stopped and just kept on laboring. But man, it was brutal. I felt no discomfort or pain in the front of my uterus; it was ALL back labor. My mother, who had back labor with two OP babies (see this link for info on OP babies: http://spinningbabies.com/baby-positions/posterior ), always said it felt like a gremlin was coming out of her butt. EXACTLY. What an eloquent way to put it, mom! I also felt like lower pelvis and my hips were seriously breaking. It was incredible.

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In addition to complaining about wanting it to be over, as I was talking to David recently, he asked me if I remember telling everyone how great he was. I almost forgot! He was REALLY great. Man he was a trooper. He did acupuncture, cupping, electrical stimulation, and massage on me for 25 hours. I don’t even remember if he slept at all. I would look at Bethany or Lauren when he was out of the room and say “He’s so great.” Then he would come back, and I’d look at him and say, “You’re so great!!”  I honestly don’t remember what else I said. I know I was funny, but I don’t remember how or why.

I think it was between 7 and 9pm on Friday night that the midwives checked me and told me that they didn’t think the baby was in an optimal position. I asked specifically what position. They suspected acynclitism (more about that here: http://spinningbabies.com/baby-positions/all-positions/asynclitism). My midwife brain immediately went on and I knew we’d have to try to adjust him. So, they had me doing everything. I climbed so many stairs, I’m sure by then if they didn’t already know, our neighbors must have heard me laboring in the stairwell. I did pancake flips (one side to the other), tried being on my side, tried hands and knees, leaning over the ball, etc. The best position was hands and knees—that’s when I felt the least pressure. The worst was on my back/side. I HATED IT. They would check me and I’d tell them to hurry it up so I could stand again. It felt like there was a knife in my sacrum and my pelvis was being hit by something hard (like a baby’s head….). I think it was also at this point that I said in a panic, “Can someone call Emelia!? Get her over here!” Emelia had been my confidant and unofficial doula throughout my last weeks and I knew it would make me feel better if she was there. So she said she would come down, in the middle of this huge blizzard, just to hold my hand (she did more than that).

I don’t remember when I passed the 5cm mark, but I think it was around 10pm on Friday Night. I only found this out later. It had taken me roughly 20 hours of ridiculous labor to get to 5 cm. I had a premature urge to push at this point, due to the baby’s position. I would have a contraction and all I wanted to do was push into it, but I couldn’t! I had to blow through the contractions as best as I could. I actually did a very funny thing when I was on my back or side–during a contraction, I would bicycle one of my legs in the air. I had to do this, because of my hip pain. I needed to open and move my hips. Susi, my midwife, also said I had the best labor faces. You’ll see some gems in the collection of photos accompanying the story.

This is where it gets really fuzzy for me. After the 5cm mark (sometime after 10 or 11), and after the baby presumably had turned or adjusted enough to apply the appropriate pressure to my cervix, I progressed quickly—at some point I remember I had bloody show, and Susi kept saying “That’s great bloody show, Lara!” and all I could think was “Yeah, whatever. It’s sooooo greatttttt I’m soooo excited. Woooo. NOT.” But I was in labor, so I wasn’t too chipper at that point. Then, around…1am or 2am my bulging bag of waters ballooned out and burst while I was laboring on the toilet and David went “Wow!!” and I said “Oh god oh god!” Because I thought the baby was coming way too fast. It went fast from that point on. They did not want to break my bag of waters artificially, since the baby was in a wonky position—had they done that, he would have had much more trouble turning in my pelvis without his cushion.

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I remember wanting to push so badly after that. So I told Susi, “I really have to push. Can you check me?” She checked me, and told me she would feel during a contraction to make sure my pushing was safe and effective. It was!! She had refused to tell me the actual cm all throughout my labor (I found out later), but when I was a 9 she finally told me and I pushed and got rid of my last lip of cervix and was complete! A note to those who may confused about why I was pushing while not dilated to a perfect 10cm. Our bodies naturally push sometimes when in labor, and its not necessarily when it’s “time to push”. So in the above scenario, I was pushing to help my cervix effectively dilate the rest of the way, and also because I COULD NOT LONGER HELP IT. Needing to push IS literally like throwing up in reverse. I would get a contraction and it would be near impossible to not bear down with the pressure and push. This isn’t always a good idea, but I had great midwives who ensured that I wasn’t going to push on a cervix that wasn’t ready to move out of the way for that baby.

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I started squatting by the bed around 2:45am or so and at one point I decided to reach in and see if I could feel anything. All of a sudden I felt a baby head with hair on it! I exclaimed to everyone “I feel his head!” Up to that point, it didn’t seem as real. But when I actually felt his head, my adrenaline kicked in (read about the fetal ejection reflex here: http://www.collegeofmidwives.org/collegeofmidwives.org/news01/MFER_CPM_define01a.htm ). I was beyond excited and so relieved that I was almost done. Each time I pushed I felt his head get lower and lower until I finally realized he was about to come out. I turned around and Emelia supported me under my arms while David, Susi, and Teresa prepared to catch the baby. I tried to push slowly, but it was VERY difficult. I saw in the mirror that the baby’s head was still rotating as he was crowning, which was wild. Then I just gave one other big push and his head was out. David was supporting his head. I rested for a second and thought “I gotta get his shoulders out now!” So I pushed again and out he came!! I was in awe at what I had just done. I looked over at Teresa and said, “ I just had a baby!” and she smiled and said, “Yes you did!”

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ImageAs we waited for the placenta, I held the baby as close as I could. He had a bit of a short cord (not too short), so I couldn’t hold him up a lot. In my excitement I wanted Susi to cut the cord early and she reminded me that it hadn’t stopped pulsing yet. Then, it seemed that the placenta wasn’t coming, and I had lost just a teensy bit more blood that usual, but still within normal (around 750ml, I believe, for my midwife friends), so they decided to give me a shot of Pitocin and get me to bear down a bit. It came out unexpectedly fast a few minutes later and they massaged my fundus and had the baby latched to help with contracting down. After we got all squared away there, we got me cleaned up a bit and in bed with the babe. He was examined and weighed, 7lbs 2 oz, 18.5 inches long. By then, there was around 2 feet of snow on the ground, and it was still snowing. Susi and Teresa examined me for any abrasions or tears, and I had just a small first degree tear that went slightly into the muscle (so not quite 2nd degree, but a little bit). Susi recommended that if I didn’t want sutures, I do the “lying in” and stay in bed, with my legs closed, for one to two weeks.  I agreed, since that stuff stings, man! They were checking things out and after 25 hours of labor, during which I never uttered a single vulgarity, I said “Shit, Susi, shit! Sorry, Susi.” It was worse than actually pushing the baby out.

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After I was taken care of, and David was already snoring in bed next to us, I snuggled in with baby and everyone went home. It wasn’t until the next morning when David was up that we actually talked about names. We decided he looked like a Ramzi, and so he was named! Emelia told me later that her and Lauren were talking and said they thought he looked like a Ramzi too.

I asked David what he remembers from the labor and birth and he said this: “Not much. The howling wind; you in and out of the pool; watching your water break on the toilet; you screaming about your butt (I DID do this. I screamed several times “My butt is going to explode!” anyone with back labor or an OP baby will understand);catching our son.

I asked Emelia what some of her favorite quotes were and she said this: “”Holy shit! Sorry Susi.” And “My butt is exploding!”

So there it is. My long and winding story. After discussing it with Teresa and Susi later, we came to the conclusion that not only was it possible that he had been acynclitic, but its possible he turned OP before labor and took what’s called the “long arc rotation” to be born (more on that here: http://spinningbabies.com/baby-positions/all-positions/right-o-posterior ), based on how his head was born and how it restituted (more on that here, too: http://spinningbabies.com/about-spinning-babies/390-how-do-babies-rotate?start=1 ). It was obvious he had been cock eyed in utero, too, as the whole right side of his face was swollen and a bit bruised, and he had some molding going on. In the end, we will never really know for sure, even though my midwife brain wants to figure it out. What we do know, though, is that he was born healthy and alert and is now an active 6 month old with some attitude!

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