Cleft Lip and Palate

The Potholes of the Palate: The Daily Impact of Living with a Fistula

We all know what it's like. You're driving home, and there's that irritating pothole in the road yet again. It seemed like just last month that the council were out fixing it, and yet it's back already. It's frustrating - most of the time you're paying attention and remember to swerve and avoid it, but sometimes you forget and you head straight into it, leading you to have to stop and assess for damage. Now, imagine that pothole is on the roof of your mouth.

Every day. Every mealtime. Every quick snack on the go requires careful consideration. But before we get there, let’s cover off how we got here.


What is a fistula?

It’s a hole that links two body parts or cavities to each other. Two body parts that are not supposed to be connected. In the context of a cleft, we’re referring to an oronasal fistula – a hole between the mouth cavity and the nasal cavity. They can occur in several other parts of the body though for different reasons – a tracheoesophageal fistula is one between the windpipe and oesophagus (not ideal) and you can probably figure out where a rectovaginal fistula can be found (also not ideal but a fairly common and easily fixable consequence of the miracle of childbirth). In the context of oronasal ones, you can have more than one fistula, in which case these are referred to as fistulae (if we are being anal about it, like that aforementioned fistula), but fistulas is also an acceptable term to most of us.

How does a fistula occur?

In the context of cleft palate, fistulae can occur following a palate repair (seems bizarre right, that a side-effect of a surgery to fix a hole is to develop another hole?) The reality is, this is because a cleft palate repair is an incredibly delicate procedure, likened to sewing together multiple pieces of wet tissue paper that are probably only a little larger than the nail on your thumb. Everything can go well at the time of the surgery, but truth be told, the body is fairly averse to change, and it will do whatever it can to put things back to where they last were. This can mean that there can be a lot of tension on the new repair and it may open up in part. Fortunately, it’s pretty uncommon for the entire repair to open up, rather it may open up at one or more of its weakest points leaving smaller holes than the original cleft palate.

Can you fix a fistula?

You can certainly give it a go, but there are no guarantees here. Each time you try to fix it, the reality is that you have less and less tissue to work with. I have had five palate/fistula repair attempts now, and we’re at a point where we’ve pretty much run out of donor tissue. My cleft was on the right hand side of my palate, so the intact left side of the palate is the logical place to borrow tissue from. Each time you do so, you create scar tissue, and scar tissue does not make good donor tissue. On the most recent attempt, unfortunately the donor tissue used to make a flap died a couple of weeks after surgery meaning that the hole that the flap was designed to plug is exposed, effectively creating a tunnel from the oral cavity to the nasal cavity. Or perhaps a cave system would be a better metaphor – with a big wide entrance that you can walk into, before narrowing to a crawl space sized tunnel leading through to the nasal floor on the other side.

Is a fistula a problem?

This depends really on the location and extent of the fistula(e). If it’s small and doesn’t go all the way through to the nasal cavity, it’s probably not too problematic and it may be best to leave it alone rather than to try to fix it and risk making it worse (who cares what the roof of your mouth looks like, only dentists look in there, and they’ve seen a lot worse).

On the other hand, if it does extend all the way through to the nasal cavity and is a reasonable size, it is going to allow air through as well as providing a place for things to get stuck in. When air gets through, it means that when you are talking, some of the air that was destined to come out of your mouth will leak through your nose – this can sometimes make an audible noise, or make your voice sound hypernasal. In any case, it will reduce the amount of air available for speech, and so you will get fewer words out per breath. That air escaping will also make sucking through a straw very difficult as you just can’t create the pressure valve needed to suck. Similarly with blowing, you will lose some of that air through the fistula, so there goes my prospects of being a children’s entertainer making balloon animals.

In addition to air, sometimes liquid can make its way through there too. Whilst this might make a cool party trick as a child, as an adult it’s just downright embarrassing. I’m quite lucky in the sense that the cave system between my oral and nasal cavities is (nowadays) so complex and convoluted that it is very hard for liquid to penetrate all the way through, but I’m always worried that it might happen – probably on a first date.

How does a residual fistula impact on my day to day life?

The pesky residual fistula just behind my top teeth (photo: February 2017)

Beware of sharp edges

Let’s face it – sharp things in any of our mouths are not a lot of fun. Now imagine, you’ve got a hole up there which attracts oddly shaped pieces of food and is also uber sensitive and fragile so any sharp object will do more than just a little scratch. Where possible, I try and control this by picking foods that have fewer sharp edges. Crisps are the main challenge here – I’ll only opt to buy crisps that are circular in shape rather than triangles (may as well just put razors in the crisp packet as far as I’m concerned); although of course as soon as you bite into the crisp, shards of crisp begin working their way around your mouth. Think very much of this like driving on a gravel road – I slow right down and go at a very careful pace, keeping track of where the crisp is in my mouth and doing my best to steer it clear of any potholes.

Hmmm do I really want to have rice?

This one is always a predicament for me. I do really like a lot of rice based dishes like curry, chilli and sweet and sour chicken, but unfortunately grains of rice are absolutely the perfect size to lodge themselves up into the fistula, so it’s par for the course that if I’m having rice, at least one grain will find its way up there. Often, my tongue is strong enough and coordinated enough to head up there and scoop it back out again, but if not, it’ll become the job of a fingernail – fine if I’m having a takeaway on a Friday night and can nip to the bathroom, but I probably wouldn’t pick a rice meal in a particularly formal setting or on an aeroplane – last year I was flying from Christchurch to London and got as far as my stopover in Auckland before a piece of lettuce had worked its way up there and I spent the rest of the journey frustrated at not being able to get it out of there again!

Does Kenny even know how to make Spaghetti Bolognese?

If you’ve ever had the privilege of dining with me and I said that I was making spaghetti bolognese for dinner, you could be forgiven for thinking I don’t know what spaghetti is when I served the dish with penne, rigatoni or fusilli. The reason for this, is that these are much easier for me to eat – I can simply put these pasta types onto my fork and place them into my mouth without having to use suction to get it into my mouth. Of course, if you serve me spaghetti, I will gratefully eat it, I just have to wrap it many times around the fork first! Same goes for noodles, I’ll avoid them if I’m making a meal selection for myself.

Can I have a knife with that?

When eating in an oriental restaurant, even asking for a fork can be bad enough, conceding one’s inability to use chopsticks, but the reality is sometimes, I need the staff to hunt high and low and dust off a knife – often the bite size pieces of chicken they serve are still a little bit too big if you’ve got a fragile palate – you don’t want a piece of crispy chicken working its way anywhere near that hole. I’m not doing it to be difficult, I just don’t want to ruin a good meal by injuring myself.

That weirdo in the corner at McDonalds and Subway

As I mentioned, sucking through a straw is nigh on impossible – in fact, persisting with it could well make the fistula even bigger and no McDonald’s thickshake is worth that. Therefore, that means, I’m the strange bloke in the corner at your local McD’s who has taken the lid off his drink and is drinking directly from the cup! Children stop and stare, often bewildered and scared by this bizarre sorcery. Fortunately, with people becoming increasingly aware of the environmental impact of straws, they are falling out of favour, making you look less out of place drinking a Pimms from the glass.

I’m not drunk officer, but I can’t blow into your breathalyser

I’m yet to be breath-tested in the UK, so I’m not too sure how this will go, but in New Zealand roadside breath testing is incredibly common (because sadly, so is drink driving), and has happened to me many times as I’ve driven up to a routine traffic stop. If you’ve had nothing to drink, it’s easy – you just talk into their breathalyser thing that simply detects if there’s alcohol on your breath or not – if not, then you just drive away. If however you’ve had any alcohol you then need an evidential breath test to determine exactly how much – i.e. are you still within the limits of the law? This is where it gets tricky as this is the test I can’t do – I can fly through the first one, but when asked to “blow, blow, blow” into the machine, I’ll never produce enough pressure to give a reading. You can imagine how this would look to an officer – they know you’ve had something to drink, but not how much. Then suddenly I have to explain that I can’t co-operate with their test (refusing to do so is a criminal offence too) and instead have to request to be taken to a hospital for a blood test (their thinking would be that I’m just buying myself time to sober up by insisting on going to the hospital). Seems like a mighty lot of hassle on my way home – therefore I generally won’t drink anything before driving because I don’t want to get myself arrested for refusing to cooperate with a task that I physically cannot complete (even though I would never have been above the permitted level of alcohol to drive).

Excuse me while I put my finger up here

Ah dammit! Despite my best steering and driving I’ve wound up right in the pothole and my tongue is unable to reverse us back out of this one. Time to call the fingernail tow-truck. I’ve tried many things over the years to help with this – toothpicks (ouch – see point above re: sharp things!), water syringes (ineffective) and cotton buds (effective, but getting them into the right place is very difficult – particularly in a mirror when left = right) – but the only truly effective thing is the fingernail. With the sensory feedback that a finger gets it’s very easy to navigate it to where it needs to be, and a fingernail is a good size to scoop things up and pull them out. The only thing is, it’s pretty unusual seeing a grown adult putting their finger into their mouth – this one is best done in private.

The Toothbrush Waltz

Of course, with a cleft, it is even more important to make sure that teeth are kept clean and well looked after. Even more so when there’s a fistula as it provides a free passage for bacteria from the nasal cavity to enter into the mouth right behind the teeth. One of the cruel ironies though is that because the hole sits just a few millimetres behind the front top teeth, there’s not a heck of a lot of room up there for the electric toothbrush (you really don’t want to jam that into the fistula), so I have to do this bizarre little toothbrush dance to clean the back of my teeth by putting the bristles on the front and back of my teeth at the same time to keep the toothbrush head clear of the forbidden airspace. It’s amazing how you learn to adapt.

What treatment options are left?

So after reading that, you might be wondering why not just get it fixed? Well the reality is that there are not many treatment options that are (if you’ll pardon the pun) palatable. The only option left that has a fighting chance of working at this point is a tongue flap. This is a particularly invasive procedure that I’m not really prepared to go through on the off chance that it might work. This procedure would involve surgically attaching my tongue to the roof of my mouth for three weeks, allowing the flap to grow into the hole, before surgically removing the tongue at the end of the three weeks. During that three week period I wouldn’t be able to speak, and would have to be fed by a nasogastric tube, followed by the usual 6-12 month recovery that comes from any time you play jiggery-pokery with the palate. Of course, there’s always the risk that you make things worse and at this point in my life, it’s not something that I see worth taking the risk in my personal circumstances. I also haven’t yet had my tongue harvested for anything (unlike all the other tissues in my mouth) and I’m keen to keep it that way – tongues are so important for eating, swallowing, speaking and kissing of the French variety. And besides, when the surgeon described the procedure to me, I couldn’t help but think it sounded a little bit too like The Human Centipede (it’s banned in the UK, don’t look it up – if you’re reading this in New Zealand on the other hand, you’ll find it on Netflix, go knock yourself out).

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