Chapter 3. Cutting all ties

I had heard of the expression tongue tied when I was growing up, I used to think it was when you got your words mixed up. My dad used to tell us tongue twisters when we were kids travelling to the caravan, he used to get us to repeat these big long complicated tongue twisting phrases, we used to laugh our heads off because we would be getting mixed up and saying the wrong things. Looking back he was probably just trying to kill time on a long journey with three kids in the back of the car, fed up of playing eye spy, but we used to love it.

When my midwife told me that my baby was tongue tied I couldn’t understand what she was saying, I looked into his tiny mouth and saw a piece of skin attached to the bottom of his tongue, I don’t think I even listened to what she was saying properly after that. I was still getting to terms with how absolutely perfect he was, and now someone was telling me that something was wrong with him?! I heard her waffling on about a ‘procedure’ to get it ‘snipped’ and my stomach was turning, I couldn’t concentrate because I was panicking, I remember just wanting her to leave so that I could Google it and find out exactly what I was dealing with!

After an evening of frantic googling I discovered how common it was to have a baby with a tongue tie, I relaxed a bit, but I couldn’t help wondering why it was so common? So common in fact that in Liverpool there was an entire clinic set up for carrying out these ‘procedures’ twice a week in Alder Hey. The NHS website says tongue tie effects between 4 and 11% of newborns which doesn’t seem like many really, but 2 clinics each week, that’s over 70 babies a week who are affected just in Liverpool, plus the waiting list is over 6 weeks long and growing, I had no idea it was such a big problem!

At 1 week old my boy had lost 10% of his birth weight, and my midwife was concerned that he wasn’t able to latch properly because of his tongue and therefore he wasn’t getting enough milk. I felt sick about that, I felt like I couldn’t feed my baby properly I remember thinking it was all my fault as well, I felt like I’d kind of failed at breastfeeding, before our journey had really even began. I know how mad that sounds now, but at the beginning, feeding Blue Eyes literally consumed my life! If I wasn’t doing it I was thinking about it, and talking to people about it, and reading up on it and most of all I was worrying about it! It was such a crazy time.  I was so concerned that he wasn’t getting enough milk it played on my mind day and night. It was a horrible and helpless feeling thinking he was going to bed hungry. I hated it.

After three weeks of waiting for my appointment I had had enough, I rang Alder Hey frantic and said I just need to be seen earlier! I couldn’t bare to wait so long knowing my boy wasn’t getting enough milk, I was told I would be put on the cancellations list but I didn’t hold much hope. I rang my midwife and she told me that there are private clinics who can perform the procedure, she said we would be seen straight away.

After a few minutes of googling I had found the details of a private clinic that specialised in tongue ties and I rang up to see what their waiting list looked like. ‘We can see your son at 5pm on Wednesday’ the lady said happily, brilliant, I thought, just 2 days to wait what a relief! ‘the procedure costs £250 and will take around 15 minutes’ my heart sank, £250! ‘That’s fine’ I said hanging up the phone.

The following day after accepting that it was worth paying any amount of money to help our boy feed properly, and to stop me torturing myself, I began raring myself up for taking him in. I had read that they hold your baby’s mouth open, lift the tongue and snip the underneath with a pair of surgical scissors! Without any numbing or pain relief at all. Within minutes the whole thing is over, but the thought of it still was making me sick to my stomach.

The following afternoon I had a phone call from Alder Hey, they had a cancellation that Saturday, which meant I could get the tongue tie snipped for free without having to go privately and without the wait, it was good news.

Before I knew it we were in the waiting room and she was calling us in, as I handed my baby over the tears welled in my eyes, I know it sounds dramatic, but it was another feeling I had never felt before, it felt like someone was taking him to hurt him and I was just allowing it to happen. It was going to be his first experience of pain and I hated that.

It has really made me think since about how parents must feel with poorly babies who have to hand them over to have major life saving operations, I guess it is because they literally have no choice, but I just don’t know how they deal with that. I hope and pray that it is something I never have to experience.

Luckily what I had read about the procedure was true, it was literally over within minutes, and he was handed straight back to me, my brave boy didn’t even cry! (Which was more than could be said for his mother who was in bits by this point!) I was told to go to the side room and feed him which I did, and the difference it made immediately was just unbelievable. He latched on straight away without any of the usual messing around, and for the first time I felt like he was getting a proper feed, I could feel the tears welling again, but this time with relief and sheer joy. I don’t think my boy could quite believe his luck either, and to be honest he’s never really stopped feeding ever since! Steadily putting on weight and getting bigger and stronger by the day.
Having a baby with a tongue tie is something I hadn’t heard of before I had my son, and I was quite shocked to learn of the extent of what I believe to be a growing problem. I found myself wondering what actually causes tongue tie? And what I found out was quite alarming to say the least! (This bit is quite heavy so bare with me!)

Tongue tie may be considered a midline defect, a problem that occurs along the vertical axis, (so basically the middle bit of the body). It’s cousins and/or close friends are celft lip/palate and spina bifida to name just a few. A lack of adequate folic acid may contribute to tongue ties. Genetics may also be a factor. Anyone heard of the MTHFR gene? I hadn’t until I began researching, and call me a hypochondriac (my husband does) but I’m convinced that I have it, as there is no history of tongue ties in my family as far as I am aware. Basically, this gene mutation causes the individual with it to have trouble processing amino acids and B vitamins in particular, folic acid. Without this, you can take as many prenatal vitamins or folic acid as you like, eat lentils and green veg until the cows come home, but you will NEVER have enough folic acid because your body simply can not process it. Having the MTHFR gene a basically means you will not be able to convert folic acid into 5-methyltetrahydrofolate, which is what it needs to do to absorb it. This mutation can also cause a host of other issues which is why its worth it to get tested if you suspect this may be a problem.

I also read that in 99% of cases, tongue tie goes hand in hand with lip tie. This is something no one had ever mentioned to me before, it certainly wasn’t mentioned to me by my midwife or any of the health professionals at Alder Hey.

They checked my baby in the hospital for a tongue tie when he was first born, obviously not very well because they told me he was fine then later it was diagnosed by my midwife at home, but is anyone even checking for lip ties? Worryingly probably not.

For anyone who is interested, more info can be found here; http://mthfr.net/the-intersection-of-tongue-tie-mthfr/2014/05/23/
I still can’t really get my head around it. I can’t believe that no one tells you about the likelihood of experiencing something like that before you start taking the prenatal tablets, that actually there is a chance that you may have this gene mutation and there is also a pretty good chance that you may be taking these tablets every day for nine months and they are doing buggar all! I also can’t believe that in this day and age there is nothing to prevent tongue and lip ties from happening altogether, even for those who are unable to process folic acid. I think it must come down to a lack of awareness in the end, it certainly did for me anyway.
I can’t help but feel shocked at some of the information I have found out over the past week just by having a little read online, there appears to be a whole host of studies going on in America and it looks like people are starting to connect the dots and realise tongue ties are becoming more of a concern, it will be interesting to find out what comes of it all.

As for me, I will certainly be looking into alternatives to folic acid if we have any more children in the future to prevent them from having to go through what blue eyes did.

In Alder Hey we were in and out within half an hour and the procedure wasn’t really a big deal in the grand scheme of things, we were lucky, but something that will live with me forever is the heart wrenching feeling of handing my baby over to that doctor on that day.

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Chapter 3. Cutting all ties

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