Our tongue-tie story

As a follow-up to my recent post on tongue-tie (what it is, how it can affect breastfeeding), I thought I’d share the story of tongue-tie in Andrew and me. To save me writing it out from scratch, I thought I’d share a letter that I recently wrote as feedback to our GP practice, which basically tells our story. Of course I’ve anonymised it because my aim is not to name and shame, and besides, it’s not just our practice where this is an issue. My aim is actually to try and raise awareness in any small way that I can, and in the case of this letter, maybe help other families (and potentially us as a family with our second baby) who confront the issue of tongue-tie affecting breastfeeding. Things can only improve if feedback is given where appropriate, and this was the point of my letter.

Encouragingly I have already heard back from the practice manager who received my letter; she was very pleasant and said that my letter had been passed to one of the doctors whom we saw (though the other doctor was a locum who no longer worked at the practice), who will read and let me know her comments in due course. The practice manager herself said that she couldn’t personally make much comment on such a clinical matter, which I completely understand, but I am reassured by the conversation I had with her that she will ensure that my letter will not go unnoticed. I will update this post when I hear any more from them.

So….here’s the story of how tongue-tie affected us and what we did about it….

Dear Practice Manager,

I would like to offer some feedback on the advice of two GPs at the practice concerning the diagnosis of a tongue-tie in my son, Andrew. He is now 15 months old, but I will refer to two appointments when he was 7 and 8 weeks old. I am writing now, rather than just after the appointments, partly because having a baby has of course kept me busy, and partly because I am now expecting my second baby, and the importance of this issue has come back to mind. My aim in writing is to try and make a difference for other families who may confront this. I need to give some background for everything to make sense, but I have tried to keep things as summarised as possible.

Andrew was born after an uncomplicated pregnancy and labour, and we were discharged from hospital the day after. At 6 days old, he was admitted to hospital with dehydration and a 19% loss of birth weight. Our community midwife, the hospital doctors and the hospital’s infant feeding specialist midwife all agreed after talking to me about the first 6 days that these symptoms were caused by the fact that my milk had not yet ‘come in’ (there was still only colostrum), and I had been trying to exclusively breastfeed him. Apparently, though, this is fairly common. After he’d recovered by being fed formula milk as well as any breast milk that I was able to produce, he was discharged. For the following weeks, I continued to breastfeed Andrew, but also continued with the formula supplements, as he was still not gaining enough weight according to the growth chart in his little red health-check book. Every week I also attended the breastfeeding drop-in clinic at Chesterton Children’s Centre, to get help with trying to increase my supply.

When Andrew was 7 weeks old, one of the volunteer breastfeeding experts at the drop-in looked in his mouth whilst he was smiling at her. She noticed that his tongue looked anchored towards the back, and didn’t move as it should. Two other volunteer experts there also had a look, and agreed that it was a potential case of tongue-tie, but that I should speak to my GP about getting referred to a tongue-tie specialist at Addenbrooke’s or Bedford hospital, as that is where they knew other cases were referred to. If he did have a tongue-tie, that could help explain why my milk supply was not sufficient: tongue-tie can cause a poor suck, and therefore an inefficient removal of milk from the breast, which leads to less milk being made, because it does not need to replace the milk which did not leave the breast.

The next day I made an appointment for Andrew with a GP at [our surgery]. I talked with her about Andrew’s poor weight gain, my milk supply, the potential diagnosis of tongue-tie, and how that might be affecting my supply if Andrew couldn’t suck efficiently. She said that she wasn’t an expert on tongue-tie (of course I understand that), but printed out the contact details for Addenbrooke’s and Bedford hospital departments that deal with tongue-tie. She said that the system was such that she couldn’t refer him herself, but that I could contact both hospitals directly. I thought this sounded odd at the time, but didn’t like to question her authority. However, when I spoke to one of the breastfeeding experts who had seen us at the drop-in, she said that this was not the system – instead our GP should do the referral.

A few days later, we had Andrew’s 8-week check with the GP booked in anyway, so I knew I had another opportunity to ask about a tongue-tie referral. This appointment was with another doctor. When I explained about Andrew’s weight gain, my milk supply, and the potential tongue-tie diagnosis, she did a ‘test’ for tongue-tie herself. This involved putting her (washed) little finger into his mouth, and feeling how he sucked it. In her opinion, from this ‘test’, he had a good suck, and she did not think it was necessary to refer us to an expert. I found out later, from the (private) tongue-tie specialist whom we eventually saw, that this is a pointless ‘test’ for tongue-tie, as a finger is nothing like a big mouthful of breast that a baby’s mouth and tongue should fit nicely onto for a good suck.

At both the appointments I have described, the doctors said words to the effect that it wouldn’t make much difference if I could produce some more milk myself by getting his tongue-tie snipped, as I was already giving him formula supplements, and it would not harm to give him more formula to help him gain weight. I was particularly struck by this attitude, because all the NHS literature on breastfeeding I had been given antenatally gave the strong message that ‘breast was best’ (i.e. better than formula feeding) and that mums should exclusively breastfeed for 6 months before introducing other food and drink. Here I was, doing everything possible to give my son as much breast milk as possible, and get as near to exclusive breastfeeding as possible, because that is what I wanted to do, yet I was being told that this was not necessary by two doctors. I was so dumb-founded and confused whilst on the spot in the surgery, that I could not voice my concern at this difference in the doctors’ attitude compared to all the antenatal NHS breastfeeding literature. Moreover, I later remembered the NHS video advert for breastfeeding which is played on a loop with other adverts in the main waiting room at the surgery – an obvious promotion of the benefits of breastfeeding in the workplace of the doctors we saw.

Since then, I have also noticed that in the NHS ‘Pregnancy’ book, which I was given by the GP whom I first visited when I found out I was pregnant with Andrew, it states the following (p110):

Tongue-tie. Some babies are born with a tight piece of skin between the underside of their tongue and the floor of their mouth. This is known as tongue-tie, and it can affect feeding by making it hard for your baby to attach to your breast. Tongue-tie can be treated easily, so if you have any concerns talk to your midwife or health visitor or contact the National Breastfeeding Helpline.”

There is obviously an awareness within the NHS that tongue-tie can cause breastfeeding problems, and that it can be treated easily, but this was not the impression I got from the attitude of the GPs whom we saw.

After coming away from these two GP appointments with no referral to a tongue-tie expert, I spoke to other mums I knew (through a breastfeeding support group) who had similar experiences with their GPs concerning tongue-tie. They had all contacted a private lactation consultant who specialises in tongue-tie, and paid for her to assess their baby’s tongue and snip the skin which causes the tie if necessary. These mums had all noticed an improvement in their baby’s feeding patterns and weight gain after she had snipped the tongue-tie. So I contacted her too. She came to assess him at one day before 10 weeks old, and diagnosed a 50% posterior tongue-tie (where 100% is a piece of skin under the tongue which goes right to the tip); she snipped it there and then in a very quick procedure which caused Andrew relatively little pain. From that week onwards, Andrew started to gain noticeably more weight each week, and we were soon put on to monthly as opposed to weekly weigh-ins as he was doing so well.

The tongue-tie snip clearly made a difference in his feeding and weight gain; although my supply did not increase to the point that we no longer needed formula supplements, I did not need to increase the supplements as much after 10 weeks as I had before, which suggests that my supply did increase, because he naturally needed more milk as he grew. When he started eating solid food at 6 months, of course the amount of milk he needed decreased over time, and by the time he was eating a balanced and varied diet of regular meals, I stopped giving him formula milk. At 15 months, he still happily breastfeeds regularly each day, as well as eating a good diet. When I think back to how easy it would have been to give up breastfeeding and just formula feed him, I am so happy that I persevered in the face of adversity to get to where we are now. The tongue-tie was a major part of this journey for us.

As I stated at the beginning of this letter, I hope that sharing our experience with you will encourage the GPs at the practice to become better informed about the potential effects of tongue-tie for breastfeeding, and the system that is already in place for GPs to refer potential cases to experts. This will in turn, I hope, help other families who have a potential case of tongue-tie interfering with breastfeeding. When our second baby is born, I will be much more aware about the possibility of he/she being tongue-tied (since it runs in families), and I will be more persistent at getting the tongue looked at as soon as possible if it looks as though it could be tied. I do not want to complain about individuals, as I don’t think that will help anyone, especially as this is long past the original appointments. As far as I have heard from other mums, this lack of knowledge about just how much of a difference tongue-tie can make in breastfeeding is common amongst GPs in Cambridge, so they are not alone. But it is only possible to change this if feedback is given where appropriate.

I thank you for your time in reading this. I would like to receive your comments on our experience and how this might make a difference at the practice in the future. At the very least I would like to know that all the relevant staff have read and discussed my letter, and possibly even learnt something from it. If you have any further questions, please contact me by letter, email or telephone (contact details on letterhead).

Yours sincerely,

Ruth Cumming

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