Tongue-tie our experience

baby BBC breastfeeding call the midwife language mastitis midwife NCT NHS nipple shields pregnancy tongue tie

I had never heard of tongue tie, so I want to increase awareness especially to new parents or expectant mums. It can be considered a relatively minor problem but can lead to some really stressful times after the birth of a baby, if left undiagnosed. Everyone has a different experience and this is my account. Over the past 3 years since my son was diagnosed it has become a frequent subject of conversation and was recently mentioned in the BBC drama Call the Midwife. Perhaps it is becoming more visible than it was, I hope so but I am not convinced.

My son joined us after a challenging birth. After a couple of days in hospital and full of the excitement about my new baby, I headed home, exhausted and still struggling with feeding. I was confident it would all get easier as we both got the hang of it and I had less people pulling and squeezing my boobs. Two days later I was crying because it hurt so much and frustrated that everyone told me a different technique for latch on. A community midwife asked if anyone had told me my baby had a tongue-tie?

I had no idea what this meant but she explained it could be the cause of my tiny tot not latching on properly and causing me so much pain. At that moment I felt relief that there was an explanation for my pain and also a solution. I wiped away both mine and my frustrated hungry baby’s tears. We talked about the next steps and I then spent a few days on the phone trying to find out how to get an appointment to have the frenulum - that tied my baby’s tongue to the base of his mouth cut.

I found this amazing, as we have got so used to our NHS just referring us to the right department that we do not usually have to seek out a doctor to complete a procedure for us. Unfortunately, tongue tie division is not a routine operation and our local hospital at that time would only do it if the tongue tie had been diagnosed while we were inpatients!!! Super frustrating! Eventually I was put in touch with a GP about 45 mins drive away who does the operation in her surgery: each patient signs in as a visitor to the local area.

The three days between identifying he had a tongue tie and getting it fixed seemed like forever. We had found a way as a family of coping; looking at it now, totally unsustainable. I was expressing milk every 3 hours whilst my husband was trying to feed baby. We were advised to try and use a cup to try and avoid nipple confusion. This was really horrible as my baby screamed and screamed due to hunger and flayed around often causing my precious expressed milk to be spilt. We tried syringes, spoons and occasionally I attempted direct breast feeding all very unsuccessfully.  Every time he got close to latch on I would flinch, and if he did manage to get near me he would often fall asleep during the feed and slip off, so we would struggle through the whole thing again. In the end we used a bottle. It worked for us, as I could not cope with seeing him hungry all the time.

During a snow storm, we took our newborn to the clinic to have his tongue tie divided, full of apprehension about our baby having an operation. The doctor had written a letter to parents explaining why she was pro-dividing and pointing out how things like the ability for a child to stick out their tongue at a grown up, or lick an ice cream, as well as the potential impact on speech, were so important for the child’s future. We were very nervous about the potential pain for our new baby. He was asleep when we handed him over. The doctor and a nurse took him out of the room and returned what seemed like instantly with the job done and he was still asleep!!

It took me a while to go back to 100% breast feeding; my pain did not go overnight! I continued to express most feeds during the day, which enabled me to measure how much milk my boy was drinking (he drank every drop offered). I tried nipple shields to reduce the pain, which caused a frown from the midwife. Eventually I weaned myself off the breast pump and nipple shields and fed my greedy bonny baby. He always wanted more, so a formula top-up feed in the evening kept us both happy. I was never totally relaxed with it yet I persevered for 5 months. I think the early challenges really had an impact on me and how comfortable I felt about feeding in public.

Since we went through this experience I have encountered so many mums with similar tales, some much worse with hospital admissions due to the baby’s "failure to thrive" and severe cases of mastitis laying them low for that precious time when you want all your focus to be on your baby.

The statistics indicate an incidence of 1 in 20 tongue-tied babies, however my personal experience in my antenatal group was 50%: this could be due to us all trying to breast feed. It is a challenge to diagnose and there are many factors that are indicators of the problem in both the baby and the mother. If you are having any such problems keep asking, as different people have different experience and beliefs. Some friends struggled for up to 8 weeks after baby was born, before someone finally identified tongue tie as the cause of their problems.

Historically when a baby was born the cord would be cut by the midwife and they would check and divide a tongue-tie if it was present. During the 1940's and 50's bottle feeding was encouraged; so for several generations bottle feeding has been the easy alternative for any mother suffering the pain of incorrect latch-on due to tongue-tie. Our society and the NHS are promoting "breast is best", and in so many ways it is. However, there is not enough support with to identify tongue tie at birth or within the hospital and treat it.

My biggest question has been; why is it so hard? The NHS appears to have no policy for checking tongue-tie at birth, and even when a mum asks for it to be checked it still seems to be missed. It feels like a huge training gap among paediatricians and/or midwives. There is no ownership of the problem and mums and babies are the ones who are suffering. Diagnosis and treatment are relatively easy in those early days and the procedure requires no anaesthetic. In an era where ‘breast is best’ is so promoted, this gap in medicine is being highlighted yet no one appears to be pioneering it as something that needs to improve.

There are several informative websites to look at if you feel you need more details if you have any concerns raise it with your midwife or doctor.

http://epetitions.direct.gov.uk/petitions/36614

http://www.nhs.uk/conditions/tongue-tie/pages/introduction.aspx http://milkmatters.org.uk/2011/04/15/hidden-cause-of-feeding-problems-however-you-feed-your-baby/

www.tonguetie.co.uk


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