Doesn’t always improve. May get worse.

No randomised trials of frenotomy to treat tongue tie (TT) (click here) report breast feeding outcomes beyond a week, and most are limited to 48 hours. Nevertheless enthusiasts often claim the immediate benefit is so obvious that trials with a “no frenotomy” arm are unethical.

Tongue-tie Babies Support (click here) advocate frenotomy, they call it revision, for a long list of problems, and link their 21,000+ members to surgeons such as Bobby Gaheri (click here) and Larry Kotlow (click here). For an example of their tone, here is the latter, writing on the group home page:

“The facts are quite simple. Revise as soon as you know there are or are potentially problems. No operating room, no general anesthesia, no waiting til older.”

However, the members questions accidentally reveal the poor results that many mother/baby dyads experience. Here are just a few quotes – all from different women.

“We had it clipped around 3 weeks but still no latch, even with a nipple shield nothing. I pumped for a while but now we are on formula.”

“Baby boy (two weeks old) is 8 days post revision and I’m feeling extremely overwhelmed/ discouraged. Baby fights at the breast during latching, does not transfer milk well (I’m having to pump and supplement after nursing), refuses the left breast 9 times out of 10, and hasn’t pooped in over 48 hours. Wants to suck but refuses to comfort nurse/cluster feed so I’ve had to introduce a pacifier. I’ve been working closely with my midwife and have seen/consulted with two LC’s [lactation consultants].”

“My 2 month old had a lip tie and posterior tongue tie revised about a week and a half ago. Her sucking hasn’t really improved, and she still struggles with reflux as I too struggle with pain during nursing still. I am doing her stretches every few hours like suggested.”

“We’re 10 days post PTT [posterior tongue tie] and ULT [upper lip tie] revision. We had two days of slight improvement, two days of bliss and now he seems to be back to his old self but worse in some ways (my pain has really increased and his gas has increased, though he’s spitting up less).”

“My little girl (4 months) had a revision of both tongue and lip almost 2 weeks ago. It was done w/ a laser and only seemed to hurt for a day or so. However, since the revision she has refused to nurse. I’m so frustrated. Hard as it was to get her to nurse well before, it was still way easier than this!”

“Two laser tongue tie revisions and a lip tie revision, CST [cranio-sacral therapy], chiro, lactation consulting, suck therapy, lots of milk supplements and my supply is dwindling more everyday :// This is so very frustrating!!”

“Just wondering if anyone who’s had their babe revised has had a period where their latch has gone waaaay downhill with constant pulling on and off the breast, almost like refusal? My four month old is 7 weeks post revision (her third) […]”

“My six month old got his ULT clipped last Tuesday, I weighed him tonight and he has lost weight since the last time. Is this typical?”

Some mothers plead for good news stories having been overwhelmed with bad ones from outside the support group.

“[name redacted] can you share your experience please? I need to hear some positive ones after revision […]”  “Yes [name redacted] could you share , I think it will help … I keep hearing horror stories”

And here is a story from a bottle feeding mother.

“10 week old had ult [upper lip tie] and ptt [posterior tongue tie] revised last week. I see better upper lip latch on bottle (we are ff [formula feeding]), but leakage from bottom of mouth (before revision we saw leakage from sides). Still hear clicking sometimes. Overall, seems like slight improvement but not much. Typical? Takes time? Or just means ties weren’t really his problem (he also has high palate)?” The same mother later on writes; “Also, LO [little one] sleeping is now all messed up? He no longer sleeps for long stretches at night? Up every 2-3 hrs?and fussy to put to bed. Normal? Didn’t use to be like this pre-revision. Also, will no longer take a Paci now? Starting to second think the revision.”

This one website has hundreds, maybe thousands, of similar anecdotes, albeit mixed in with success stories. The administrators usually blame inadequate division or aftercare, and relatively few mothers blame the surgery; it’s difficult to accept that you may have cut your baby unnecessarily.

But frenotomy does not always work. People who care about breast feeding should be calling for better trials rather than advocating yet more uncontrolled surgery.

Jim Thornton