"I should really write this down."

Tuesday, March 26, 2013

Ankyloglossia: It's not a dinosaur.

The lactation consultant and the pediatrician both said the same thing, that Marin had a bit of a tight lingual frenulum. They said it can cause some problems nursing, and bad ones can cause speech problems later, but it didn't seem too bad so we should probably just wait and see before we considered whether to do anything about it.

Here's our research in a nutshell: The lingual frenulum is the thin strip of tissue that holds the middle section of your tongue to the bottom of your mouth. Sometimes it is too thick, too "short" (tight to the bottom of the mouth), and/or extends too far toward the tip of the tongue. This is called ankyloglossia, or "tongue tie". Then it kind of overdoes its job, preventing the tip of the tongue from raising up enough to do the stuff it's supposed to do, like grabbing hold of a nipple, making certain consonant sounds like "l" and "d", and reaching out past the lips to lick an ice cream cone, for example. Really bad cases can cause teeth to grow in crooked and make dental hygiene more difficult to maintain.

This isn't Marin, but her tongue looked a lot like this baby's.

Marin was able to nurse reasonably well at the hospital. She was no prodigy, but I understood that it would be painful at first until she learned to latch properly, so we just went with the flow. We went home when she was 2 days old, and she did great that first night, still taking into consideration that I thought nursing was usually "pretty painful" at first. The lactation consultant kept referring to it as "toe-curling" so I figured excruciating was par for the course. Then my milk came in. I am... ahem... well-endowed, so the difference between colostrum and milk didn't seem all that noticeable to me, but apparently it was the threshold for how well Marin's tongue could allow her to latch on. Her attempts were even more painful than before, which I didn't think was possible. She stopped nursing and started screaming. And kept screaming. All night. It was torturous to try to guess what might be wrong and feel so helpless! Finally we decided to try using the pump we rented from the hospital and giving her a bottle of breastmilk. Let me tell you how golden that slurpy relative silence felt at 4:00 AM! In the morning, we called the lactation department at the hospital and made an emergency appointment.

Our lactation specialist, Marshelle, was amazing. Marin would have been in trouble if she hadn't broken the cycle right then. She had lost a lot of weight, 10 ounces, in only a few days. We really wanted her to breastfeed. (If you don't know about all the benefits for mother and baby, click here or here. Breastmilk is like the nectar of the gods.) Anyway, Marshelle was very concerned about Marin's tongue, more so than the other professionals had seemed. She fixed us up with a nipple shield, a syringe, and a plan, and if it didn't work, we would need to have her tongue corrected. The plan was to pump a little bit to evert the nipple, then use the nipple shield to nurse, encouraging Marin with squirts of pumped milk from the syringe as necessary, then pump the other breast and feed her that from a bottle. This process took about an hour, and we had to do it every 2 hours during the day and every 4 hours at night for a week. I am saying "we" because Garret was almost as involved as I was, and I am only half-kidding. He was about as supportive and helpful as I would want a daddy to be without starting to worry about him! I definitely couldn't have done it without him.

We went back for a follow-up the next week. Marin was much happier, she had gained weight, and we were out of the woods. Marshelle still recommended that we consult a pediatric ENT to discuss whether we should have her frenulum "snipped". She was doing better, but did we want to keep up this harrowing routine for months, then deal with speech problems, and possibly end up having to do the procedure later anyway, when she might have to be under general anesthesia? We made an appointment with Dr. Mahoney, ENT.

Dr. Mahoney examined Marin's tongue and told us that she had not only a "moderate tongue tie", but also a "short mobile tongue". A "moderate" tongue tie means the tongue isn't completely tethered to the floor of the mouth, but it doesn't have the normal range of motion either. The "mobile" tongue is the part of the tongue that is supposed to be free to move around, the part that isn't completely connected to the throat in the back behind where the frenulum starts. So not only was her tongue tied down pretty tightly, it was also not as long as most people's to begin with. Our treatment options were:
  1. Wait and see what happens. Sometimes the tongue keeps growing in the first years and it might grow past the frenulum enough to prevent future speech problems. The nursing might improve very slowly if at all. The frenectomy could always be done later if necessary, but might require anesthesia and/or stitches later in childhood.
  2. Frenectomy. At her age, this would involve an outpatient procedure of snipping the frenulum to free the tongue tip and cauterizing the cut edges to prevent reattachment. She would be able to nurse the same day with minimal discomfort, and complications are extremely rare. This would almost certainly alleviate difficulty nursing and reduce the likelihood of speech problems, but she might still need an additional procedure to lengthen the short mobile tongue at a later time.
Garret and I discussed it. This was one of the first decisions we had to make for Marin that didn't seem totally obvious. I was especially upset by the possibility of my little baby needing a second, more invasive procedure later. But focusing on the decision at hand, it seemed like the pros of the frenectomy outweighed the cons, and she wouldn't remember the trauma, and maybe it would help her sooner and later. So we did it. Right then and there. Well, the doctor did it. We waited in the waiting room and I cried.

Marin fell asleep as soon as we got in the car. She slept all that afternoon and most of the night between feedings. Her frenulum was pretty thick, so there was relatively more bleeding than some cases and therefore more cauterization. For a few days, her mouth and slobber were all gray from the silver nitrate they used. A scab formed under her tongue and it all looked pretty nasty for about a week, but she was able to nurse with the nipple shield and it didn't seem to bother her too much, although she did get somewhat less cranky when the scab finally disappeared. It took a couple weeks for her to learn to use her loosened tongue to latch without the nipple shield, but we eventually weaned off of it, and now she's a nursing pro! She can stick her tongue past her bottom gums and into her lower lip, and sometimes it looks like maybe it could make it over and out before too long. It looks normal enough that the doctors probably wouldn't have noted any issue if it had started this way. We won't know if she will have speech problems until after she starts speaking, obviously, but we are optimistic that she won't need any more procedures.

Here are some fun facts to lighten up the post:
  • Marshelle also convinced our insurance company to give us a FREE Medela electric double breast pump. Score!
  • According to Dr. Mahoney, Gene Simmons from Kiss may have had a frenectomy and/or the "additional procedure" in question to lengthen his tongue. It might have been necessary and they just went overboard accidentally or at his request or he might have just had it for cosmetic reasons.
  • There's another pun somewhere in this post. I didn't intend it, but I left it for Jerry when I noticed it. We'll see if he finds it... ;o)

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