MTHFR and Our Journey with a Lip Tie/Tongue Tie Revision

(This is my tongue tie. It pulls my front teeth in, and I needed speech therapy in Kindergarden. More than half of the population has some sort of a tie. It's not normal, it's a birth defect). 

**This is *my* encounter with Lip and Tongue ties. 99.9% of babies who get them revised nurse again**

MTHFR is a gene mutation that about 40% of the population has. Normally it does not cause much trouble if it is heterozygous (think of it as a two-part gene. Heterozygous means only one side, homozygous meaning two). Homozygous is normally the one that causes the most problem (miscarriages, birth defects, etc), but the single variation of it can do so as well (although not as common).

What does MTHFR do? It can cause MANY issues, but it starts by making your body become deficient in various vitamins (some moms can lack folic acid, some Vitamin B, some all! There's a huge variation), so these Moms need more specialized prenatals than the standard ones they're given. Lack of these can case birth defects. The one in specific this blog post is about are lip ties and tongue ties. 

If you open your mouth and lift your tongue, quite possibly you have a little piece of skin holding your tongue. It's very common, but it is a BIRTH DEFECT. Pull up your upper lip. You might have one there too. Chances are, if you have a lip tie, you more than likely have a tongue tie. But if you have a tongue tie, you might not have a lip tie. 

(before, tongue can hardly move and after the revision, full function)

My first child, Aeri, had a hard time latching on to breastfeed at birth. She had a 4th percentile head, and we contributed that to why the latch was not great. We used a nipple shield until she was about 7 weeks old, when we weaned her from it straight to the breast. She stopped gaining weight at a very fast pace, but we contributed that to her weight finally slowing down instead of being from a slight problem with milk transfer. We have had no other problems breastfeeding, and she is deciding whether to wean or not today at almost 28 months old. 

She had horrible colic, and reflux. She needed to take Zantac for a year, and had a horrible time with solids. She was not diagnosed with a level 2 tongue tie until just recently. But we will bring her to speech therapy to learn to compensate for the tie, as it is messing with her speech. This is the same route my parents chose with me, and one day, when I find a doctor who will do so, I hope to get mine cut. 

My second child, Leo, was not so lucky. Just like Aeri, he could not latch once my milk came in (and we thought it was his 1st percentile head), so we used a nipple shield until 5 weeks. He started gaining weight rapidly, but once my milk was established, he lost weight fast! He started to not nurse as long (5 minutes was common for both kids to nurse), and he started giving up after the initial letdown. He had horrible reflux that was diagnosed G.E.R.D at his 8 week baby checkup. He was put on Zantac and Gripe Water.

Being almost 2lbs lighter than he was a month ago, I panicked and began to research and came across a Tongue Tie Support Group. And after posting several photos and videos, a few ILCBC Lactation Consultants recommended he get evaluated for a revision of his level 3 lip tie and possible tongue tie (basically just go get the ties cut). 

We got the referral and went to get it done. When the doctor who was going to do the procedure looked, he saw that Leo had a severe posterior tongue tie and called in 4 other doctors. They tried to see if he could stick his tongue out or touch the top of his mouth, but no, he couldn't do any of those. So he got both his tongue and lip tie cut. 

(Top left: Immediately after

Top right: 4 hours post op

Middle left: 32 hours post op

Middle right: 91 hours post op

Bottom: 1 week, 1 day post op)

Suddenly my son could move his tongue. However, due to being so tied down, he had to relearn to suckle again. He was not even able to suck on a bottle. We had to exercise his tongue by pushing the tongue down and outwards as his tongue would not lay down. Imagine being tied down your whole life and trying to get up. Suddenly, those ropes are cut. You go where you were trying to the whole time. That is what has happened to his tongue. 

He has not relearned to breastfeed (which happens in like .1% of revised babies), but had we not fixed his, he would have had thousands of dollars in orthodonic surgeries straightening teeth, fixing pallets, fixing the jaw, etc. There are no regrets. 

Some more problems with tip and tongue ties if not treated:

- Ties can cause teeth coming in crooked, delayed speech/mispronouncing of words, decay at the teeth in the top, and depending on the severity, risk of splitting the pallet right open.
- Most ties don't cause problems. But the ones that do can cause shallow latch (moms that complain babies never could latch), bad transfer of milk (babies losing weight becoming failure to thrive), and because of bad transfer of milk, the milk supply dries (the moms that complain their milk dried up at 3 months).
- They can cause pain on the nipples, cause babies to click and lose suction, and can get them to swallow air giving reflux and colic symptoms.
- Tongue Tied Babies AND adults normally choke on their own spit or medicine often as well.

- Suckling causes the gut to work more efficiently. And if they're not suckling properly, they're damaging their guts.

We are two weeks post op, and hes fully healed. If we ever have another child, we'll be looking for this immediately. Also, will be taking vitamins catering to my body's deficiencies to avoid another problem like this.