Eating, drinking and swallowing difficulties in children born with OA/TOF

Thank you very much. It’s a real pleasure to be here. Thank you very much to TOFS for asking me. I’m going to do a bit of a whistle stop tour on eating, drinking and swallowing difficulties in OA/TOF I am talking to a really an expert audience. So I hope that you’ll find something interesting, but I suspect you probably know quite a lot of this and I can learn an awful lot from you as well.

So I thought I’d just go over three of the most common conditions that we see in children with oesophageal atresia that create these feeding and swallowing difficulties. I thought I’d talk just a little bit about how we test for them and then think about some common strategies that might help.

So I thought I’d start with oesophageal dysmotility and I’m sure you’re pretty aware that almost all, basically all children who are born with oesophageal atresia are going to experience some degree of oesophageal dysmotility.

So oesophageal dysmotility is, well, in normal motility, We’ve got a food pipe that is squeezing. As the food goes into your food pipe, the muscles of your oesophagus, so it’s a round circular tube and the muscles behind the food squeeze together a bit like a kind of snake contracting sequentially in like a wave-like fashion. And it helps to push the food from the top to the bottom of your food pipe. Oh. Can’t watch it again, YouTube won’t let us. But in children born with oesophageal atresia, these wave-like movements, the pressure that comes behind the food are altered. They’re different. They’re either weak or they’re sometimes completely absent. So that changes how the food is able to move down that food pipe.

And this is what it looks like when we do a barium swallow. So this is an x-ray. I’m sure pretty much all your children would have had an x-ray a little bit like this at some point. So the black stuff is the food. And this is actually usually when we do these kind of contrast studies, we just do it with liquid. So your child is often lying down and they have a drink and we watch where it goes. This one’s slightly different in that the child was sitting up and we’ve given them food. And what we can see is that the food is moving down through the throat really beautifully. 

But when it’s getting to the food pipe, instead of seeing that nice ball of food with that wave-like pattern behind it, it’s kind of filling up the food pipe a little bit like a drain pipe and it’s just moving very slowly down and sometimes it kind of yo-yos up and down. The other thing that we can sometimes see is a little bit, Mr. Giuliani will be able to tell me if this is actually where the site of the surgery was, but somewhere around here we often see a little, not a stricture, but a little sort of waste of where the surgery happened. And particularly around that bit where the surgery happened, you often get a bit of yo-yoing of the food as it’s going down. And that’s because there isn’t this force, this pressure that’s pushing the food nicely through. So that’s what we call oesophageal dysmotility.

This is another way of looking at it. So this is our gold standard. This is the kind of best test that we can use to actually test for oesophageal dysmotility and it’s called an oesophageal manometry. And this is a tube that goes into the child’s nose, down their throat and down into their food, down their food pipe and into their stomach. And it’s specifically measuring for pressure. It’s a little bit different to the barium swallow where we’re really looking at anatomy. This is measuring pressure. So the warm colours, the red colours are high pressure and the blue colours are low pressure. The cold is low pressure. And this is a normal study. This is time going along the bottom. 

So this is, imagine the food is coming down into the food pipe and then behind it we’ve got this wave of high pressure kind of going in a nice diagonal. So that’s over time, it’s coming down like that. And then these next three are not typical of normal motility. 

So in this one in, can you see my cursor? So this one is where we’ve got some pressure in the food pipe, but it’s not going in a wave like motion. It’s the whole food pipe at one point is basically being pressured by the by the bolus and it and it it’s not moving it down, it’s just pushing on it. This next one is where we’ve got some movement of the of some peristalsis, some movement of the food pipe, but you can see the colours are much are very different. We haven’t got that dark pressure, that high pressure. So we’ve got weak motility. And then in this last one, we’ve pretty much got no pressure. pressurisation, no pressure in the oesophagus at all, no motility. So those are the three patterns.

Now, quite interestingly, what the research would, we would expect reasonably to think that the absent motility, the one on the far side, all the pressurisation patterns, might actually mean that the child’s got more problems with eating and drinking. You would might assume that if you’ve got some motility, that’s better. Actually, the research doesn’t really play that out. There’s not that much difference in symptom report, how the child is, between these three different patterns. What it does do, as well as making it difficult to move food through, it’s very difficult for reflux to get cleared. So that the food pipe has to clear the reflux out as well. And that we do see different patterns between the one, the children with weaker motility have more chance of clearing that reflux compared to the children with absent motility.

So how does it affect eating drinking? 

Well, we’ve all heard about stickies. I couldn’t find, I was trying to find a picture of a stick, but I found some frogs on a stick. I thought, oh, that’s good. So this is where you’ve got a bit of food that is in the oesophagus, it’s been swallowed down and it has got stuck. It has got stuck somewhere in the oesophagus, maybe around where we’re seeing that little bit of wasting, the narrowing, but it may not be at that point, but it’s stuck there because there isn’t that pressure behind it to help push it through. And often, usually with time, it does eventually go down. But sometimes it doesn’t. Sometimes it needs to come back up again and sometimes it needs to be retrieved out of there. So that’s that can that those are frightening events for any parent looking after a child with oesophageal atresia. And we never know when they’re going to happen. And they can be eating the same food that they’ve eaten for the last three months, absolutely fine. And then the next time they eat it, seems to be getting a bit stuck. And that is one of the most challenging things about being a parent of a child with TOF, is this uncertainty. And me as a speech and language therapist, I have lots of parents say to me, can I, should I try this? Should I try that? And it is so hard for me to be able to say, this food is 100% always going to be absolutely fine, unless it’s really, really, really runny puree and you’re not getting a stricture. But so what we what we try and do with our advice is to give specific advice, but in a kind of broad context. So acknowledging like our understanding of how the food pipe works and we give you our best possible advice, acknowledging that sometimes these children don’t do what we’re expecting them to do. It can also affect the ability for children to eat large volumes. 

So in that barium swallow picture that we saw where the food pipe was building, for the food was building up in the food pipe, that eventually that child is going to say, I can’t eat anymore just now and just my food pipe’s full. I can’t do it anymore. I’m going to have to slow down, stop, come back. So often children with dysmotility are kind of grazers. They want to eat little and often throughout the day. They’re not just being difficult. They’re not just being, you know, I just want to eat the snacks, although they probably do just want to eat the snacks. But little volumes are there for a reason. We can see obviously that it is, but the same thing, movement is slow. So mealtimes are likely to be a little bit more prolonged. 

And sometimes it can actually cause noisy breathing. So this kind of noise that you hear at the end of a food, at the end of meal times or during a meal is because you’ve some that that food pipe is filling up. So sometimes that gets a little bit of that referred noise, but also it puts a little bit of pressure on the windpipe and you’ve got secretions, normal secretions in your windpipe and when you’ve got a little bit of pressure from that nice filled up oesophagus onto your food pipe, makes you breathe a little bit harder and you can hear that secretions. That doesn’t  mean that anything new has gone down the wrong way necessarily, just means that we’re hearing what’s in your trachea, in your windpipe more. 

So what helps? Well, given that we know that almost everybody with oesophageal atresia suffers from oesophageal dysmotility and the vast majority of adults with oesophageal atresia enjoy eating. They eat a really lovely range of foods. We know that you can, even with not great motility, eat very well. But often adults, when we’re looking at the research, describe using some strategies, coping, adaptations that help with eating whatever they want to eat. And that is typically having lots of water, sips of water, always having a bit of water there when they’re drinking and when they’re eating. chewing their food may be a little bit better than somebody without oesophageal atresia and sometimes doing a little bit of selective food choices like avoiding some things like sometimes raw vegetables, some bread, some meats and you choose to eat foods that are a little bit easier to chew or swallow down. So those things can help.

However, we are dealing with toddlers. and toddlers have a mind of their own and they haven’t read my helpful advice about chewing food well or drinking when they eat or not wanting to eat their siblings pizza. They want to do it their way and so that can be really challenging for parents to manage.

So actually When we’re weaning through those, through those, what can we do to help that process along? Well, certainly introducing a cup early is a good piece of advice. All children cough when they, just so you know, all children cough when they first start drinking from a cup. So that is sometimes quite alarming, but actually it’s normal part of development because they just can’t control it and they miss time their swallow. So introducing a cup is always a good idea because then they can start to take sips of drink to help food go down. Actually encouraging self-feeding is a really good idea because what people have to do is learn, our children have to learn how to cope and adapt to their different physiology, their different anatomy. And The best way that they can do that is by gaining control and feeding themselves is one of those ways of gaining control.

However, we have to put in some parameters around that because otherwise they’re off having pizza and it’s or a bit of sausage and there it is getting stuck. So self-feeding, yes, but we can use some clever little strategies to help that by things like having Ice lollies, smoothies. So they are fruit or vegetable smoothies and they are then frozen and they are then, the child can then feed themselves smoothies, but actually it’s gone, it’s basically a puree, but it feels like they’re doing it, they don’t want to eat puree. Lots of children don’t want to eat puree, which is annoying because that’s the easiest thing. But things like that, strategies like putting, having foods that dissolve in your mouth like melty sticks or crisp breads and spreading them with pate, cream cheese, hummus, those sorts of things where the child can actually feed themselves. They’re learning to bite, they’re learning to chew, but we’re not getting big globs of bread stuck in oesophagus. And then thinking and thinking about food choices and cooking methods, slow cooking, slow cooking foods to make them really nice and soft, lots of liquids that can that can all help as well.

I’m going to move quickly on to risk of gastroesophageal reflux.

I would say gastroesophageal reflux is probably one of the most challenging things as a speech and language therapist that I come across because I think, I’m assuming most people probably know what it is, but when food, reflux, it’s just describing a food or liquid that has been in your stomach, it’s mixed with the stomach acid and then it’s coming back up into the food pipe and it can come all the way up, it can come into your throat, it can cause vomiting, it may not cause vomiting, but it often causes pain and discomfort. So how do we test it?

Well, we might see it on a barium swallow, but a barium swallow isn’t a great test for reflux. So we often use a pH impedance probe and that’s measuring the acid coming up and it’s in there for 24 hours. So how does reflux affect eating and drinking? Well, as I’ve said, it can cause coughing, it can cause a little bit of pain and vomiting. it can make the children refuse to eat often. And once children have experienced pain and vomiting associated with feeding, they very quickly think, I don’t want to eat, thank you very much. It’s going to cause me pain and it’s going to cause me to vomit. So I’m just going to refuse. It can also make getting enough in to grow quite challenging and it can affect your ability to coordinate swallowing. If you’ve got something coming back up again, you’ve got something trying to come back down, you’ve got your feeding at the same time as something’s coming back up, you’ve got a bit of a, it can affect your coordination or in some children it doesn’t have any effect at all and they eat and drink perfectly happily. Which I would say with oesophageal dysmotility as well, some children don’t seem have any trouble with eating and drinking, they do well. So what is commonly used to help?

Well, we can think about, I haven’t gone into things like surgery and tubes, but these things you probably are aware of, medication and scheduling their feed so that we’re actually feeding more frequently in smaller volumes often works better than larger volumes infrequently. You tend not to have acidic stuff coming back up again if you’ve got milk in your tummy, but smaller volumes works a little bit better.

Cue based feeding is where we’re reading, we’re following the child’s cues so they know what’s going on in their stomach far better than we know what’s going on in their stomach from the outside.

So actually being led by your child, by your baby as to when and how much to feed often works much better than us setting these schedules. and expecting the baby to follow our schedule and actually them thinking, okay, I’ve had enough now. I can feel it starting to come up. I’m going to listen to, they’re going to start refusing or squirming and then milk comes back up sometimes. But if we follow their cues around the feed schedule, it works much, much better. Thickening the milk can sometimes help. Positioning can sometimes help. and sometimes some more easily digestible milks can help.

I’ve talked about this a little bit already, actually, about how these mealtime strategies about giving the child control, following their cues, helping them with smaller, more frequent mealtimes.

And if you’ve got a child who’s reluctant to eat a technique called graded exposure, where let’s say they will only eat potato waffles, So actually your next step is to go to slightly different shaped potato waffles or chips or something that’s very similar. Or if a child’s really struggling, you’re going to start with just smelling and then you’re going to start with licking and then you’re going to start with tasting and this very gradual building up of exposure to new foods.

And then just finally for the last couple of minutes, oro-pharyngeal dysphagia. So this is oro is to do with your mouth, pharynx pharyngeal is to do with your throat and dysphagia is the medical word for swallowing difficulty.

So in normal swallowing, the food or drink goes into your mouth, your tongue pushes it back. This is your airway here, your larynx going down to your windpipe. And this is your food pipe sitting just behind it. So you can see it’s basically one tube that then divides into two tubes. It’s not a great design because actually this airway has to close at exactly the right time in order to prevent any food or drink going down the wrong way. So this is what a speech and language therapists are mostly concerned with is this kind of feeding, swallowing difficulty. And we look at it in.

Lots of different things can cause this with children with oesophageal atresia. So they may have a laryngeal cleft or a bit of the back of their voice box. It is not completely fused. They may have a cord palsy. So these are your vocal cords sit at the top of your in your in your windpipe, the top of your windpipe in your voice box. And sometimes one of them doesn’t move properly, is stuck in an outward position. So that can create a little bit of a gap which can let liquid in.

Tracheomalacia is the flattening or the floppiness of the airway. And certainly in younger children, this can have a really significant impact on their ability to feed. Because when you’re bottle feeding, you have to suck, you have to swallow, you have to breathe. But as you swallow, you’re stopping breathing. So they go, sucks or no breathe, sucks or no breathe.

And if you’ve got a floppier airway and you’re working harder and when you, so with that process of sucks or no breathe, but you’re stopping breathing once every second, you’re going to end up breathing harder and faster, Paul. You’re going to get out of breath, basically. Feeding makes you get out of breath. It makes you work a little bit harder and your airway then can collapse more. So Quite often, if you’ve got a baby whose airways collapsing quite a lot, it really can impact on their ability to sustain their sucking, their swallowing and their breathing and they end up with some coordination difficulties and stuff going down the wrong way.

Likewise, if you’ve got a very, very slow moving oesophagus, it can affect what’s happening higher up. You’ve got this kind of bite between stuff trying to go down and stuff trying to come up.

So we use a video frosty. I don’t know what’s going on with this video, really sorry. But where we use barium, like a barium swallow and we look at the mouth and we look at the throat and we watch how the liquid is going down and we look how well it’s timed and we look at how well the airway is closing, how well the muscles are moving to push things through. So that’s most common. mainly used. And then we can also look with a camera. So this is looking with a camera going in through the child’s nose and it’s sitting just at the top of the throat. And this here is the epiglottis. Here’s the vocal cords. There is a vocal cord palsy for this child. So you can see this cord is moving, whereas this one isn’t. And then the food pipe is sitting just here. And at some point, this person is going to swallow. This is the tongue. This kind of knobbly bit here. It’s the back of the tongue and that is a swallow. So we can test it. Those are the two most common ways of looking at swallowing.

And the way that it affects eating and drinking is that we sometimes off. So if the timing of that or the airway isn’t closing properly, we’re going to get a little bit of often liquid, more likely liquid than food, ending up going down the wrong way and it causes you to cough. You get that same kind of noisy breathing that we sometimes hear with children who’ve got dysmotility and they also might refuse because it makes them cough and it’s uncomfortable and they don’t want to do it.

But so a lot of these symptoms actually, they really crossover. So you’ve got dysmotility and reflux and or found your dysphagia. And actually one of the key things is working together as a team to try and figure out which bits are impacting on which.

So what can help with this?

Well, we sometimes use positioning, which sometimes talk about pacing or making the food smaller, the amount that the child is swallowing smaller, and sometimes we use a powder to help thicken up the milk.

So where to get help for any of these feeding and swallowing problems or hopefully there’ll be a multidisciplinary team at your surgical hospital who can work together to try and pull apart all of these different bits. And that’s the most challenging thing. There were all these different things that present quite similarly, but have different underlying causes and trying to get to the bottom of what actually is causing that noise or that difficulty with the with eating whatever it is that they’re having difficulty with. That is why a multidisciplinary team is so effective. We can all talk to each other and say, oh, what do you think to this bit? Shall we do this? Shall we try this? And we work together to try and get to the bottom of it.

Community speech and language therapist and a dietitian can be quite helpful in the community because they can actually spend time at home and watch and help with mealtime strategies.

Vuokko was saying this earlier, that TOFS peer support, actually getting advice from other parents can be really helpful.

And then friends and family, and this is quite a challenge in the research that I did, friends and family support is usually something that we take for granted that your parents or your mother, ignore or somebody will be there to help guide you through the process of having a baby. And weaning for the first time or doing all of this.

But actually parents are saying to us, they don’t get the same support when you’ve got a child with oesophageal atresia because it’s scary. It’s scary for other people to look after your child. It’s scary for you as a parent to leave your child with somebody who maybe doesn’t have the same background knowledge and experience that you have. And so getting support from friends and family is really, is tricky and it’s something that we, that isn’t the same for parents of children with oesophageal atresia as it is for other parents.

So little tips like actually bringing a grandparent or friend to a community speech and language therapy appointment so that you’re there together and your strategies aren’t just on you, the person who was at the appointment. You can share that responsibility or share those thoughts because you don’t always remember everything. You bring somebody else with you and they can then listen.

Having the community speech and language therapist or the CNS team go and give some education to the nursery. So it’s not all on you to give all of that information, actually having, trying to facilitate those around you to gain some knowledge so that actually you can, they can help you feel more supported.

Got to finish there.

Are there any questions?