The Crazy Tongue Tie Lady

I first noticed that his tongue looked funny on the first day after he was born. It had a heart shaped appearance to it and what looked like a piece of string underneath attaching it to the mouth floor when he cried. Having absolutely no knowledge of babies I just thought that was normal and something that went away. It was pretty early in too that I felt he wasn’t feeding properly. Again I had no knowledge or experience about infant feeding but my instinct told me something wasn’t right. Initially I was reassured it would get a bit easier as sometimes the milk isn’t ready following a c section. I felt like he was chomping on my nipple. Feeding was so painful every time. He was also very unsettled and only slept for very short periods to wake screaming. I stayed in hospital for a few days after the section as I was anaemic and they were deciding whether to give me a blood transfusion. It seemed he constantly wanted the breast but became upset when feeding. Several midwives had a look and said it looked like I was feeding ok but I really felt he wasn’t.

Day 1 post birth I asked a midwife if it looked like I was feeding ok. ‘if you want to worry, breastfeed.’ came the response. Day 2 post birth I complained again that I didn’t think the baby was feeding properly. I felt like they thought I was a neurotic first time mother but they did ask the breastfeeding specialist nurse to come see me. Enter the Barbara Woodhouse of breastfeeding. I was already feeling tearful and hormonal as my milk was coming in and with it a crapload of hormones! After an hour of repetitive positioning and attachment I finally cracked. My nipples were now so painful I couldn’t bare one more moment of it. I can’t it’s too painful I sobbed. It can’t be hurting she told me. I can’t repeat what I wanted to say to her but I think I actually shouted at her and she scuttled off. She returned later, looked in my sons mouth and said that she thought he had a tongue tie. I had so many questions and basically she told me it was fine. A consultant can snip it and he will be able to feed ok. So I carried on struggling to feed the rest of the day and sobbed on and off. I was a right mess and it was a horrible day.

Day 3. I woke up and decided I had had enough of this BS. This is my baby, he is not feeding properly and I want them to help me do something about it. I washed, put my make up on and got dressed. I strutted down to the office and said assertively that I knew my baby was not receiving my milk adequately. I wanted the consultant to come and review him today and I was not leaving the hospital until he did. I told them I wanted to pump my milk out and bottle feed him while I waited. She probably could see I looked a little crazy so didn’t say anything apart from ok I will organise that for you. The electric pump was great even if I felt like a bit of a cow. My baby took the milk really well from a bottle and he seemed content for the first time really. The consultant came the next day to snip his tongue tie. It was not traumatic for the baby and he didn’t cry a bit. His tongue still looked funny but I was reassured that all my breastfeeding troubles were now over and resumed trying to breastfeed him. I went home later that day.

The community midwives were really supportive when they called but I still struggled with breastfeeding. My nipples were bruised and bleeding and I could have got shares in lansinoh cream! I pumped and pumped but I never really established a decent supply. I tried nipple shields but by then it was the beginning of the end. My nipples were wrecked, I was anxious and feeling guilty. Why couldn’t I feed my baby? What was wrong with me? I started supplementing with formula and eventually I had no supply. I beat myself up about that for a long time. I felt like I had failed my baby.

It took me some time to find a bottle teat he could suck properly. I never questioned for a minute that the tie was anything but fixed. We eventually found that MAM bottles and teats worked for us best. We had some issues with colic and reflux too and we found cranial osteopathy to be so helpful. My baby never ever took large amounts of formula and used to feed every 2-3hours. It was constant and sleep was non existent unless I was holding him or pushing him in the pushchair. We just got on with it. He never finished a feed but always seemed to be hungry. I started weaning him at exactly 4 months. This improved things somewhat and he seemed to manage purees well.

Nothing else caused me any concern until much later on when he was almost 1. He struggled with very textured food. It seemed to me that food would go round and round but he couldn’t actually swallow it unless he had a drink. Then he would cough and splutter and most of the liquid would come back out. I was sure this wasn’t right. Then at 13 months his top teeth were through and I began brushing them. I had been brushing the lower teeth for quite some time and he had always liked it but suddenly he pulled away and cried when I tried to brush his teeth. I thought he may have a mouth ulcers so I inspected his mouth. What I saw was a thick fibrous band of skin from his lip to his palate. It was so difficult to move his upper lip at all. It looked like his tongue tie but on the lip so I googled tongue tie on lip. It was actually a thing.

From there I found a support group that could direct you to actual researched practitioners. I must say here up front that the treatment of lip ties is controversial. In fact some things I found said that the tongue tie doesn’t exist. I took my son to our local NHS paediatric dentist who told me there was nothing abnormal in his mouth. And when I pointed out the thick band of tissue she told me that had I not pointed it out she wouldn’t have noticed it (so that makes it non existent right!?) I went home determined. I contacted the NHS ENT specialist who kindly spoke with me on the phone but was sorry that he couldn’t help as I was not breastfeeding and speech was not a problem yet. Another dead end. The support group had a list of recommended private practitioners for treatment of ties. The closest one to me that used a laser which was my preferred method was 4 hours away in London. We video messaged and he agreed that there was a definite maxillary tie (lip tie) that needed treatment and he could assess the tongue to see if it had been effectively treated.

Dr Levinkind is a specialist paediatric dentist that practices in the East Finchley area of London. He was reassuring and explained everything very well. He examined my son and showed me that he still had a very thick (posterior) tongue tie. The procedure was very quick and he was returned to me within 20 minutes. I fed him a bottle of milk straight away.

The first time he ate solid food and drank water afterwards was amazing! It was just, well normal. No rolling around of food in the mouth. No coughing and spluttering with a drink. No soaking of the clothes as the water poured out of the mouth. I had been so worried whether I was making the right decision and then I knew I had.

From that moment I knew that actually mammy did know best right from the start. All that guilt I had felt for failing to breastfeed dissolved. I did not fail my baby, the system did. I was just a mum doing the best I could for my baby with the support I was given.

My second son is almost 1 year old now. (My eldest is 6) and I would like to say things have changed a lot but they haven’t really. The midwives had more awareness of tongue tie but I felt no actual knowledge of how to recognise this. The doctor who performed his paediatric check said there was no tongue tie. I told her there actually was a tie but felt there was no point arguing. It was a much more slight tie but I immediately recognised the signs when feeding. I was not going to put another baby through a month of starving and stressing myself out about his weight. So I have bottle fed him from day 3.

My older seems to have no issues now. His speech is perfect and he had no dental issues. My baby has no issues with solids at all or taking fluids from any type of beaker.

So there you have it. That is why I call myself the crazy tongue tie lady. If you have any questions feel free to message me on my Instagram @th3secretlifeofme

People I found useful:

Paediatric Dentistry

Love and peace xx

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