Breastfeeding With A Lip And Tongue Tie

Jul 19, 2011 by Aly Hodge

This weeks Breast Mates Guest post comes from Helena who writes about breastfeeding with a lip and tongue tie .I have been following Helena on Twitter from the first weeks she had her son Ben and she has amazed me on how she gone through what she has so could breastfeed and carry on breastfeeding with not much support from the beginning.

If you would like guest post your positive breastfeeding story please use the contact form or find on Twitter  or leave a message on the PLUS 2.4 fan page.

In the first 3 months of my son’s life, I wanted to quit breastfeeding multiple times. In the first 9 weeks, the feeling occurred several times a day. I’m not sure what kept me going, but now I can’t see an end in sight. Okay, so maybe my mother-in-law saying “he’ll be on the bottle by two weeks” helped!

Ben was born in December. A beautiful, chubby, squishy little newborn, weighing 9lbs. The first time I held it was love. I had always assumed that I would breastfeed him, especially in light of all the positive research, so within an hour of his birth, we  skin to skin contact and the midwives had helped me to latch him on for his first feed. It was uncomfortable, but I assumed that with a little mouth, it wasn’t going to be perfect at first.

But things went from bad to worse. I would struggle to get him latched on at all, and when he did latch, he slipped off my nipple during the feed. It was also excruciatingly painful! I would wince and cry and dig my nails in to my palms to no avail. Something was very wrong.

Over the first six weeks of his life, midwives, health visitors, nurses and an NCT breastfeeding counsellor all examined his mouth and observed a feed. All said that it looked fine, despite milk leaking out of his mouth and my pain. A nurse even suggested, when witnessing that he was lying open mouthed drinking the letdown without even latching on, that he would “learn” not to fall off the breast.  I pointed out a tight upper lip tie, but was told that it was not likely to be a problem. I was placated with “by 6 weeks it’ll click” comments which were infuriating. Despite this, his weight gain was excellent. I had over active letdown and a massive oversupply.

By 9 weeks I didn’t. I started seeking additional support and attending the breastfeeding support group at my local Children’s centre. I took Ben to a Baby Café (at Jehefinner’s suggestion) 30 minutes drive away in Northampton. He was 9 weeks old, and I was desperate, exhausted, in pain, demoralised, miserable, and trying so hard not to give up every time I fed him. He had been getting increasingly fussy, feeding for hours at a time, or feeding for 15 minutes every 45 minutes to an hour. I had fed him right before we set off and he was already hungry. It was there that tongue tie was suggested. It had been suggested before but ruled out by the health visitor. She was wrong. Two days later, his posterior tongue tie was divided.

I wish I could say that the results were instant, but because Ben was older, he had learnt bad feeding habits in order to get to my milk. It took 5 more weeks until there was a marked improvement in my pain, but it still continued because of the lip tie.

Then at 3 months, Ben became ill. He had cold after cold, a bout of diarrhoea which lasted two weeks, not to mention two sets of injections. Over 7 weeks he went from the 75th centile to the 9th. He would gain an ounce, then lose it the next week. By the end of the 7th week, I broke down in tears of frustration at the news that he still had not gained weight. My health visitor put her hand on my shoulder and asked if I wanted to give up. I was incensed. Give up?! What gave her that idea? We’d got this far! She told me to supplement, but I refused to use formula. If I was going to supplement with anything, it would be my milk.

This was easier said than done. Ben didn’t want to take a bottle, and still isn’t a fan of it now. We tried a Medela Special Need feeder, which Ben eventually took, and once a day, Dave would give him a bottle of my milk. Slowly his weight started to slowly creep back up, and within 9 weeks he was back to the 50th centile! He gained weight like a newborn and we only supplemented for about 2 weeks. He has now doubled his birth weight. Not bad considering all our trouble.

He also, after an 18 week battle with the NHS, had his lip tie treated at 6 months which solved the remainder of our pain issues. It’s still there as it healed back, but the frenulum is much looser and doesn’t affect feeding. Ben is now, at just over 7 months old, crawling, standing, cruising a little bit and generally causing trouble. He’s just awesome, and it’s all because of my milk! Who cares if I can’t leave him with anyone. I don’t want to leave him.

For those of you that don’t know what a tongue or lip tie is, I invite you to have a look in your own mouth. The lip tie is easiest to explain. There’s usually a little flap of skin, a frenulum, there are multiple spellings, connecting the top lip to the gums. In Ben’s case, this band of skin is large, thick, inserts right at the bottom of his gums (we think he’ll have a gap between his teeth), and restricts the movement of his top lip significantly. My sister has a similar lip tie, equally thick, but doesn’t restrict the movement of her lip.

A tongue tie is similar. It connects the bottom of the tongue to the floor of the mouth. There are a variety of types: anterior ties that are initially obvious and cause a heart shaped tongue when baby cries, or posterior ties, like Ben’s, which are totally invisible to the naked eye, but can be felt under the tongue, like a little speed bump. They can cause a variety of problems, from gassiness/reflux to changes in the baby’s palate.

Ben’s tie stopped him from poking his tongue past his lower gums, which is essential for breastfeeding. He couldn’t groove his tongue to scoop in the breast which is why his latch slipped and leaked, and he tended to compress the breast to extract milk, like chewing. For me it caused intense pain to the point that I was treated twice for thrush, lipstick shaped nipples, and I suffered terribly from vasospasm (where the blood supply to the nipple stops, turning it white).

That said, every baby is different. As I mentioned, my sister had a lip tie which didn’t affect my mother’s breastfeeding relationship with her, and there are people who can successfully breastfeed babies with very obvious tongue ties with no problem at all! There’s also a misconception that tongue tied babies can bottle feed okay too, but if they can’t attach to the breast, they might not be able to attach to a bottle either. Ben certainly couldn’t. Anyway, moving on…

My struggle also affected me positively, in that I now want to help support others to breastfeed. I got so much help from people via a vast number of sources, that I wanted to give a little back. So I applied to the ABM to be a Mother Supporter. I’m still waiting to hear back, but I’m hopeful, and that’s not a word I could have used 6 months ago.

Thank you Helena for writing such an informative piece on breastfeeding with a lip and tongue tie.You are an incredible example of a mum wanting to give her child the best and to do your own research.I hope your successful with your mother suporter role.