Breastfeeding and Upper Lip Tie – one Mother’s story

My thanks to this mother (who wishes to remain anonymous) for sharing her story with me, and asking me to share it with you all.

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I have a daughter born 25th January this year, and my son in January 2014. I struggled to breastfeed my son – I was producing 50oz of milk a day, his latch ‘looked’ perfect despite being agony, but he was colicky, constantly screamed and obviously couldn’t get what he needed. The latch was so painful I couldn’t even bring myself to have him latch after the foot prick test (and was made to feel dreadful for that by the HV who thought I just wasn’t trying hard enough). We lasted three weeks in total, despite my crying out for bf support (useless and pressured, no actual support or advice offered), I became obsessed with pumping and lack of support plus my failure to breastfeed successfully triggered PND. I was told that I hadn’t persevered enough, it can hurt and that I had given up too early, it was my own fault for supplementing and basically felt like crap.

I had been doing my own research in the meantime, and suspected top lip tie. I asked my HV, GP and bf support – all said he had no tongue or lip tie. I asked about the top lip, was given an odd look and they confirmed his mouth was fine.

Fast forward to a year later, different area and different health team and it was correctly identified by an HV, and my GP, and eventually a specialist. All said it would have at the very least hindered my breastfeeding latch and could have contributed to colic (bad latch would mean more air inhaled). By this time I was pregnant with my daughter, and desperate to avoid the same situation.

My midwife was an absolute angel, took detailed notes and plastered everywhere in my birth notes for a full mouth check to be completed at my daughters c-section. We discussed bf support, advice, and how to make this attempt more successful. She was wonderful, supportive and caring and I was determined to bf exclusively for at least 6 months – and she reassured me that it was possible. She was marvellous.

So. My daughter’s birth was perfect, beautiful and the team wonderful. I asked if they’d completed the mouth check, and they reassured me all was fine. I successfully breastfed in theatre, and I can’t describe how much that meant.

We managed two more feeds successfully. But then the night was awful – she screamed for five hours, couldn’t latch, jerked her head off my nipple and was desperate to feed. I knew. I checked her mouth, and she had a more severe top lip tie than my son. Now she had fully woken up from the section, she couldn’t successfully get milk. I rang for help, asked them to check her mouth – did you know that the top lip isn’t checked routinely for a tie? I didn’t. But apparently so. I explained, but no one knew what to look for. They checked my latch and said it was perfect (it wasn’t, but looks that way due to tie) and that breastfeeding was very hard etc etc learning curve. I rang twice more for help. Same again. Eventually, I rang and a student nurse came, and offered to stay with me to see if she could work out the problem. She was brilliant. She agreed that there was something wrong, as Cerys had been at my breast, frantic, for 30 minutes and was no more satisfied. She offered formula, I refused. She took Cerys to an older MW for a second opinion, and it was agreed that top lip tie was possible, and affecting feeding. I was booked into the breastfeeding expert the next morning, with the plan being that it would be resolved then (i.e. cut) and we would just get through the night. I again refused formula, so the student midwife spent three hours massaging my breasts to express milk into a syringe. Thanks to her, my daughter got 50ml of colostrum, and I am very grateful for that.

The morning came – I had been up for 26 hours by this point, but I was so hopeful. A few nurses came and asked to see Cerys’ mouth, as they had heard of the problem but never seen it before. The expert arrived, listened, checked Cerys mouth and simply said ‘I can’t help you.’ Literally her opening sentence. Apparently, despite my being assured repeatedly that it could be cut easily, top lip ties are not treated the same as a simple tongue tie. If I wanted it cutting, I had to wait for a six week NHS referral. Or travel to London for a private consultation (post c-section, with my toddler too). I asked to pump but was asked doubtfully if there was much point…? I was almost hysterical at this point, to be honest. I was devastated, genuinely gutted that not only was my breastfeeding journey going dreadfully already, but that it was also worse than with my son. I’d failed again.

I tried with the hospital colostrum pump (with no offer to help or support me to use it). It didn’t work for my already engorged breasts. I was told I couldn’t bring my own pump in, until my milk came in. Despite trying all manner of positions to breastfeed, it wasn’t working. I couldn’t concentrate to hand express into a syringe on my own while Cerys screeched at the top of her lungs. In the end, after my lovely midwife visited and she did her best to help, we agreed to formula feed (she was concerned about my PND/pumping previously, and to be honest I was probably acting a bit unhinged at this point). She held me while I cried and told me I needed to be well, I could love and be a brilliant mum regardless of how I fed. She was an angel, again. And I think (although it pains me) she was right – I would have started the obsessive pumping cycle and made myself ill again. For that, I can look at this decision with more peace in my heart.

An older midwife also checked Cerys’ mouth more in depth as she had heard what had happened, and confirmed top lip tie, and also said she has a tilted palate and low sucking action. Basically, she couldn’t suck enough for my nipple to fit correctly in her mouth either. Again, this brought me peace as I was reassured I hadn’t done it wrong – it was genuine.

What I would like is more people to be made aware of what a top lip tie is, what it looks like and how it affects breastfeeding. I would like it to be included as part of the routine full mouth check. I would like health care staff to be aware of how it is corrected, the procedure etc. There was so little knowledge that I was having to explain what it was to them, show them what it looked like. And this disaster happened despite the team being fully informed (via my notes) and my wonderful midwife’s efforts. I’d like more support for pumping/syringe feeding if mothers are still determined to feed breastmilk exclusively – it can be done; and those women should be empowered by the choice. At no point was donor milk seriously talked about, though I did ask – I was made to feel even more like a crazy person obsessed with breastfeeding!!

The whole thing was so disappointing, and I felt like I wasn’t taken seriously or listened to. I was talked over, down to and yet I knew I had more knowledge on this subject, as they didn’t even know what I was on about. It felt awful. Truly awful. They were extremely short-staffed, and I understand that, but I’d also hate to think this lack of awareness and sensitivity could be happening elsewhere. Given that I’ve identified at least four of my friends’ children with a top lip tie (despite their HV etc saying all is fine, no problem, and only checking bottom lip and tongue) I suspect it is.

Post-script from heartmummy: I asked this Mother if she had provided feedback to the hospital and she told me that this is the first time she has shared her story.  She said:

“I honestly didn’t want to feel like I was troubling the hospital I stayed at, I don’t get the feeling they would look at it as an experience to learn from, rather that I was being difficult. I overheard the head of the ward describing me as such, though she was beyond pleasant when she realised I could have heard her comments….”

For more information on upper lip tie, please see
http://www.analyticalarmadillo.co.uk/2015/01/upper-lip-tie-fall-guy

** Edited to add this statement from the Association of Tongue-Tie Practitioners: http://www.tongue-tie.org.uk/lip-tie.html **

 

Helen Calvert
November 2016

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2 thoughts on “Breastfeeding and Upper Lip Tie – one Mother’s story

  1. Jane says:

    We had a very difficult time establishing feeds with my baby. As it turned out he didnt have a lip tie but for various other reasons it was a good 10 weeks before I could feed him without needing regular painkillers and was often to be found crying in pain, and trying to do so silently into a pillow at 3am so I didn’t wake my husband. I am not that bad with pain-I pushed out an almost 9lb baby without any pain relief. But I could hardly bear this.

    My wonderful LLL leader (who is an IBCLC) supported me through everything and without her I’m sure I would have given up. I am so sad and sorry to hear that you had such awful support, conflicting advice and were given false hope of an instant fix. We *should* be obsessed with breastfeeding! It’s a good thing. And I can hardly believe that a so-called BF expert asked you if there was much point in expressing. You must have felt like you’d been kicked when you were already down. And it’s not only unkind, it’s also very inaccurate advice indeed.

    For what it’s worth, from what I have read lip ties are fairly unlikely to be the cause of painful feeding, tongue ties are more often the culprit (often posterior ones that are apparently easily missed), or a poor latch, but that’s almost not the point – nobody helped you when you needed it most. I’m so sorry you had such a traumatic journey and I think you are very brave to have shared your story.

    Like

  2. That sounds like a really frustrating experience. Tongue ties and upper lip ties can make breastfeeding so difficult, but before you experience it firsthand a lot of people don’t properly diagnose them. Thank you for sharing your story!

    Like

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