Tuesday, September 6, 2011

The trouble with Frenulums

Monkey is asleep so I thought I would talk about something that has caused us much trouble, tight frenulums. When she was born she had an Ankyloglossia or tight frenulum also know as tongue-tie and I knew it right away, despite my midwives dismissal. By day 2 she was starving and my nipples were crushed flat. She had her first release procedure done by a midwife, just enough to get a latch but a few weeks later as her mouth grew it was obviously not enough. Second procedure was done by a naturopathic pediatrician, who said it was borderline whether or not she needed it. Really? I thought, okay well do it anyway cuz nursing is hell right now. Okay, slight improvement but by 3 months old we are having the same problem, only now the foremilk she could get before is not enough to keep her full ( even tho we nursed every 45 mins, night and day). This time we saw an Ear/Nose/Throat surgeon, who gently pointed out that her frenulum was extremely tight posteriorly (in the back) and the other procedures had only released the thin tissue anteriorly (in the front). So, he gave a snip, only unlike the last two times it was deep and serious. I can't even explain to you the amount of blood coming out of my lil babes mouth, nor the screams that persisted for 20 minutes as I tried to nurse her for comfort and infection fighting reasons. My DH was out of town and the next 4 days were awful. She was in pain, so much so, I let my anti-tylenol campaign drop out of sight and gave her the nasty sticky liquid in hopes of relief for my princess. She couldn't nurse well and would pull the breast out of her mouth and writhe and scream and go back for milk only to start the process over. After a few days she seemed better, other than the twice a day I had to sweep my finger under her tongue to prevent the tissue from refusing. Only, she never did stop pulling at the breast and pinching my areola or just in general seeming to prefer a shallow latch. At this point I gave up on thinking there was a solution, I was feeling like there was nothing to be done, this was my fate, my daughters fate, a breast-feeding relationship that was anything but ideal. How I longed for the cozy comforting nursing sessions I heard women talk about and write about on their blogs. I just wanted to enjoy it more, to not cringe when she started to get restless, pinchie and desperate for more milk. At this point I had no choice but to start supplementing, I was in school at night, not getting much out of the pump and her weight gain had plateaued. I was devastated at the idea of giving her powdered formula, with no live enzymes or cultures and what exactly was I going to give her? My husband and I both have issues with cow's milk/products and she was intolerant to soy. i went to see my lactation consultant and she had the answer: goat's milk. Yup, she had just come across a recipe anf had talk to a naturopath pediatrician about it. So, I promptly went to the store and bought all the ingredients and a high powered blender. I was actually happy to make it, myself, in my kitchen. To me it was real food not over processed powder and although it wasn't breastmilk, I was happy to have something to give her a full belly. She drank it with no problems and started sleeping better at night too. i kept breast feeding 98% of the time, but she got a bottle with Papa at night, when my supple was too low.
It wasn't perfect but it was working, I was bearing through the nursing sessions by drinking lots of water, taking herbs to help my milk, massaging my breasts to help let downs and keeping her nails trimmed to save my skin.
Then something happened, one day, when she was napping I came across an LLL article: http://www.llli.org/nb/nbsepoct00p161.html
And then a blog: http://thefunnyshapedwoman.blogspot.com/2011/03/introducing-maxillary-labial-frenulum.html
I thought, OH MY GAWD, is this what is happening?? As soon as she woke up I opened up her mouth and there is was a SEVERE maxillary labial frenulum (upper lip tie). How did the ENT surgeon miss this? I called them right away and spoke to his assistant, "Well Ma'am, if she had this he would have seen it when he checked her upper lip" to which I replied (trying not to be curt) No, Ma'am, I was in the office with her and he did not check her upper lip. She was silent for a second then said "Well, let me check her chart" and put me on hold. When she came back she informed me that he could see her next week at the same charge as last time....
Okay so enter the new problem. Frenulum procedures are not considered medically necessary by insurance companies! Yup, even if your baby is losing weight, they expect you just to go to formula and good luck to ya. So, we have already paid out of pocket for the last visit, in which he failed to check her upper lip. I pushed to get in for free on this basis but was denied. It's the beginning of Summer and I was not receiving my financial aid for school nor was I working. We were strapped for cash already, there is NO way I can pay for this. FUCK! What is a mother to do.... well for one, I googled the heck out of it.... bad idea, as now I know all the risks of leaving the frenulum intact, including dental and speech issues.
So it stayed this way for a few months longer, as she reached the 8 month mark she started having trouble latching onto her wide mouth bottles. I became determined to get her off the bottle so I nursed more and more, despite the increase in pain as the frenulum got tighter and her lip started to curl in more. Now here we are at 10 months, she hasn't had a bottle in about 6 weeks, she seems to be doing good with solid food (baby led weaning) and nursing several times a day. However, now she has teeth, 2 bottom front teeth and one top front and one top canine... she also has 4 other ones punching their way through... with a bad latch this is one of the most painful moments in breast feeding I have ever had. I have the money now, so I am scheduling an appointment for the procedure. Currently waiting for a phone call back from the ENT. Both my husband and I are scared, they told me this procedure is much more serious and that she will get a local anesthetic. I can't imagine putting her through this, but idea of her needing serious dental work later idea and the fact that I really can not go on nursing like this has made me think we are making the right choice.

Anyone have their own frenulum stories? How did you and you LO cope?


  1. We have been bounced from doc to doc to try to get our son's lip tie released. It's so frustrating!!! He's 9 months and there's so much of a wait and see approach. So far he has no teeth at all, but that's not going to last. :( Can't wait to hear how everything goes!

  2. Hiya
    Is the lip tie so tight there is absolutely no flexibility ie can the top lip flange/roll back any? Are there any signs of retained birth compressions/moulding? Have you tried an osteopathy/cranial adjustments?

  3. My second daughter has an upper lip tie. Luckily it doesn't seem to affect nursing even though it looks about like the pictures (the second one with the teeth really, it separates her front teeth quite a bit). She also has an extremely high palate which is supposed to cause problems, but while causing some clicks never needed to go any further than realizing she had the issues and changing our positioning. Has a lactation consultant tried to help with the positioning (after knowing she has the lip tie?)

  4. Thanks for the comments!
    T.S.F. - I am working on a post talking about the last few days.
    A.A. - Her lip could not roll back on its own and barely when I pushed it up with my fingers. She had some craniosacral therapy when she was younger but I have no idea if she has any retained compression/mouldlings.
    Cindy - I feel like I have tried every position in the world! Her lip tie went all the way to the hard palette ,although the ENT said the palette itself was normal. I think I only saw the lactation consultant during the chaos of the tongue tie but not for lip tie. I probably will be going back because she clearly needs to relearn how to feed.