Tongue-Tie Stories and Resources

I have recently moved the majority of the Tongue tie information and stories to my other site, www.thebirthhub.co.uk If you are looking for stories or tips on finding expert diagnosis or treatment of tongue tie, please go there to see if you can find the information you’re looking for. If ot, please feel free to send me an email You can also join our support group on facebook if you wish: https://www.facebook.com/groups/tonguetie/

This page is for stories from parents, breastfeeding counsellors, lactation consultants, midwives, health visitors and anyone else involved in the care of mothers and babies who has a tongue-tie story to share. Please see my post in my blog on this website foran explanation of my interest in this subject.

If you have a story, comments or resources of interest you would like included here in order to provide support and information to parents, please feel free to contact me.

You can read more about tongue-tie on my wonderful colleague’s site: http://www.analyticalarmadillo.co.uk/

and here: http://www.brianpalmerdds.com/

http://lcgb.org/consultants_tongue.html

http://www.babyfriendly.org.uk/items/item_detail.asp?item=439

http://www.tonguetie.net/index.php?option=com_frontpage&Itemid=1

http://www.tonguetieclipit.com/Introduction.html

kellymom page on tongue tie: http://www.kellymom.com/babyconcerns/bfhelp-tonguetie.html  – includes lots of links to other info

Breastfeeding and frenulums (Dr Brian Palmer) http://www.brianpalmerdds.com/bfeed_frenulums.htm. Brian was a US dentist. Warning: some unsettling photos.

“Tongue Tie and Breastfeeding” http://www.llli.org/llleaderweb/lv/lvaprmay02p27.html by Catherine Watson Genna, IBCLC

Catherine Watson Genna’s guide to spotting tongue tie http://cwgenna.com/quickhelp.html

List of TT symptoms: http://www.ann-dobson.co.uk/tongue-tie_symptoms.html

Video of swallow study on baby with posterior tongue tie: http://www.youtube.com/watch?v=lrD9cemJNyw

Here is a recent Randomised Control Trial on the division of tongue tie

Support group on facebook https://www.facebook.com/groups/tonguetie

If you divide tongue-tie, please feel free to leave your details below.

Here is a story from Callie

Molly arrived early. After an admittedly fabulous birth, nothing had prepared me for the shock of having that birth nearly a month before I expected it. The labour progressed quickly and I was only aware of being in labour for the last two and a half hours: when they plopped my daughter on my chest, I was about 70% sure I’d dreamt the whole thing.

On admission to the ward, she had her blood sugar tested so many times that her feet resembled pin-cushions. She screamed (or tried to scream – from her immature lungs it sounded pitiful) every time, reaching out, I’m sure, for me. The midwives gave her two hours for her blood sugar to improve during which time she had numerous blood tests, but despite their hopes the levels fell
steadily and Molly became more and more listless. I was presented with the choice of giving her formula to increase her levels or to leave them to their own devices on the understanding that if they continued to drop, she’d probably go into a coma, be admitted to SCBU and put on a drip. It wasn’t a hard decision. I didn’t want to give her formula but the coma/SCBU option was not one I wanted to take. With her blood sugars at such a low level I agreed to the formula.

Minutes later the feed had come back up. Repeated tries resulted in the same and a further test revealed even lower blood sugar levels.

“You’re going to hate me for this” said the midwife, “but I’m going to say the best thing to do is to suction her out, get a tube down her, and put her on Nutriprem”. For Molly, it was the ultimate ready-meal; no need to even suck. At the same time, a hospital breastpump was wheeled in for me to extract my colostrum and encourage my milk to come in.

Our first week in hospital was fraught with visitors, an intense lack of privacy and a severe lack of support. I was terrified of handling my baby in case I inadvertently pulled on her tube and hurt her, but when I had the privacy to do so I tried to feed her myself. She would attempt to latch on but lose interest quickly and would never suck. A quick examination revealed no tongue-tie, so on the second day I was told she had no suck-reflex, and was given a nipple shield to help stimulate her. The shields worked, and eventually she started to suck. She suckled from me three times that day and I thought I was on the way to cracking it. It wasn’t perfect, but we were making small progress.

On the third day my milk came in and I was able to start storing feeds in the fridge so that the majority of her feed would be breastmilk. They refused to remove the tube or stop mix-feeding her until breastfeeding had become established, so the fight was on.

From the first afternoon of her life she was on a gut-full of Nutriprem every three hours. Even if her suck reflex HAD developed, I doubt she’d have been interested in working to get the milk from me. She wasn’t even used to having to get it from a bottle. After the success of the second day I started trying to BF using the shields before the “official” feeds but she just got angry and
frustrated. On that occasion (I think this was day three) the midwife helping us noted that while I had huge, flat-nipples, Molly had a tiny, premature jaw. This meant that Molly “couldn’t physically feed naturally anyway”, and she advised me to keep using the shields (another quick check confirmed there was no tongue-tie). However she advised against using the only comfortable,
successful position I’d found – the football hold – and after I took her advice it all went to pot again.

That day saw me in tears while another midwife agonisingly manhandled my boobs to try to hand-express a drop of milk to entice her into sucking, told me off firstly for flinching and secondly for using the shields I’d earlier been told I couldn’t physically feed her without. I have always had a bit of a problem with people touching my nipples, so this was all significantly difficult for me.
Denied the two things that had so far helped me – the shields and the football hold – everything stopped working.

After a tearful encounter with the midwife, it was generally agreed that I couldn’t physically breastfeed and the decision was made to mix feed until my milk ran out. Having accepted that I’d never be able to breastfeed, her next feed was given using a bottle. Initially I was happy and relieved but afterwards I became upset. I felt cheated. I felt I’d never properly tried and I couldn’t
believe my inability could be discovered and accepted so quickly. However the midwives were saying we wouldn’t be allowed home until we’d established a feeding routine and I was exhausted with the lack of sleep on the ward, so I didn’t feel I could ask to continue trying to BF. I told them I intended to bottlefeed.

On the fourth day Molly pulled her own tube out, putting an end to her tube-feeding. She was fully on mixed bottles that day, and having demonstrated that I could use my own breastpump on day five we were allowed home.

On the sixth day I called a BFC. She said it would be very strange to have borne a baby who physically couldn’t feed from me. She told me to put her straight back onto the cup and continue trying to feed – that in time her jaw would become bigger and she’d be able to suckle, probablyby her due date at least. We began the messy, hospital-banned process of cup-feeding at home
while I continued to express day and night. Every drop of EBM was white, liquid gold.

In continuing desperation, I called my old antenatal teacher. She told me that many women who had trouble feeding in hospital worked it out when they were relaxed and comfy in their own homes, and when the pressure was off. She told me about re-birthing in the bath. She told me to curl up in bed naked with my baby. She told me to get my top off, keep it off, and curl up on
the sofa for some skin to skin. She told me “my baby, my way” and to use whatever position was most comfortable to me.

We tried rebirthing. I cuddled up to her naked and I discarded my tops. Three days later, I finally succeeded in feeding her using the nipple shields and I was absolutely elated. After two days of feeding her with the shields, we stopped cupfeeding. Finally, at nine days old, she was exclusively breastfed.

Elation lasted for a week before the reality of the shields hit home. They were a terrible faff, and I’d been scared off by stories of diminishing milk supplies. I became irrationally jealous of people who managed to feed “bareback” – what did they have that I didn’t? The midwives advised me to start weaning her off the shields as soon as possible. At two weeks old my poor baby had been
tube-fed, cup-fed, bottle-fed and shield-fed and now they wanted me to change it again? I tried to go without a few times but it was a no go. She would neither latch nor suck. We were back on the shields almost as soon as we were off them.

Eventually, when I had some calm and privacy around me during the third week of Molly’s life, I breastfed properly three times in a row without the shields. Instead of being more difficult without them, it actually felt less pinchy. Remembering the midwife’s advice not to feed without them initially when I was tired, I popped one back on to feed her that evening but she refused to latch. She pulled terrible faces until I put away the shield, and she fed contentedly. It wasn’t comfortable, but it was working.

Exactly three weeks after her birth, we breastfed successfully for the first time using no artificial  aids.

She fed voraciously from then on. She would take over an hour to feed, and fed every 90 minutes to two hours. I would get approximately half an hour to rest between feeds. I continued to express daily and about once or twice a week James gave her a bottle of EBM when I felt I couldn’t do any more. At the time it felt like I was failing and I longed to feed her exclusively for a week without having to give her EBM.

I never experienced the cracked nipples that some people endure, but feeding was certainly uncomfortable. The feeds could be toe-curlingly needle sharp, but I stuck with it. In indignation that she was feeding around 20 times a day when the NHS booklet told me to expect to feed between 8 and 12 times, I marched along to see a Health Visitor and demanded help, but they watched a feed and told me all was normal.

It wasn’t long before I noticed she made a clicking sound when she was feeding. At 7 weeks I went to a drop in clinic but again was told all was well, there was no sign of tongue-tie or any oral problems and that she just needed “to grow a bit more”. I started to take Molly to an osteopath in the hope that she’d become more settled, and booked an appointment at the doctors. I was sure something was wrong. At 8 weeks, her symptoms were diagnosed as reflux and she was put onto medications to help her. True enough she started posseting less, but she wasn’t feeding any less frequently and wasn’t any happier.

She was only ok when she was feeding. In between she would scream and it was impossible to go anywhere or do anything. I booked ourselves onto a baby massage course and, as with any outing, I would feed her until the last possible minute before I had to leave the house, listen to her scream for the entire car journey, then start feeding again as soon as I arrived at my destination.

I couldn’t go further than 20 minutes from home. At most of the baby massage classes, I didn’t do any massage. We sat and fed while we watched everyone else. I figured that at least we were out of the house. On one occasion I tried to do the relaxation exercise at the end of the class. All the mothers lay down calmly with their gurgling babies while mine screamed. In pity, the instructor
took my baby and walked her round to try to soothe her while I relaxed. Instead I lay there and cried. What was wrong with me and my baby? Why was she never happy?

I wouldn’t say we properly established breastfeeding until three months. Her feedings had stretched out by then, and suddenly I felt like I didn’t have to concentrate on breastfeeding anymore. I was no longer counting the days before I could start weaning her, and it no longer hurt to latch her on. In fact it was a breeze. I used to envy bottle feeders the ease of making up a feed
without the discomfort and fuss of breastfeeding – now I realised how nice not having to get up in the night to make bottles was.

The feeding experience contributed to the crashing post-natal depression I suffered from, and I made the decision not to have any more children. When I unexpectedly found out I was pregnant three years later, I felt devastated. Not only was I terrified of repeating those first three months, but I knew that this time there was a significant chance I’d fail at BFing. How could I dedicate that
amount of time to feeding a baby when I had a pre-schooler to look after?

Everyone reassured me that the second baby would be easier, but I was apprehensive.

When my baby boy was born, it took him 16 hours to latch on. He seemed to be feeding well, but the old pain started coming back, and all of it reminded me too much of how things had been with Molly. But by this time I was a doula. I knew where I should be going to get help, and on day five I went and got it. This time the tongue-tie was spotted and I made an appointment to have it treated on day 6.

The Lactation Consultant diagnosed a 75% tongue tie when she saw my baby. She described all the standard signs of tongue tie and the types of behaviours associated with it, and it all sounded too familiar. I shyly asked her, just out of interest, to check Molly’s tongue while she was there. I needed to know. And there it was: another 75% tongue tie.

Maybe I should have been relieved, but I was just angry. I never felt I bonded properly with my daughter, and a large part of that was down to the problems we’d had feeding. All that could have been spared, and a life-times relationship could have been different, if she’d just had that one tiny procedure.

On the positive side, I found out what breastfeeding SHOULD have been like. My son fed with difficulty for the week following the procedure, but after that it was improvements all the way. He would feed and be satisfied. I would have longer than 20 minutes between feeds, so could spend some essential time with my daughter. Feeding was comfortable and even enjoyable. I no longer had to rush around doing errands with a screaming baby if I ever had to go out of the house. And it made a hell of a difference to our bonding and to my overall perception of breastfeeding and life with a newborn.

I remember telling my BFC that I had never enjoyed a single feed with my daughter, and I still feel heartbroken that I resented every feed. My only consolation is that she’s seen me have a successful feeding relationship with my son, and perhaps that will have slayed a few demons for
her, too.

Here is a new addition to the story circle from Sarah