Asymmetry and torticollis

Today we’re talking about a condition that is surprisingly common in babies, but little known - torticollis.

Alessia Testa had already suffered mastitis following a painful latch on one side by the time her son was six weeks old, but it was her insistence that her son had a head tilt that led to him being diagnosed and treated. With the help of physiotherapy and some simple changes at home, Luca’s neck muscles have stretched and strengthened, and he now feeds well as an 18 month old.

We’re also joined by Nicola Walker, an infant feeding specialist, and senior physiotherapist, to help answer the science questions, and explain how you can get help if you have noticed head tilt or facial asymmetry in your child. We discuss the breastfeeding implications of torticollis, sternocleidomastoid tumour, and plagiocephaly - some big words that can feel intimidating, but support is out there.

My new book, ‘Supporting the Transition from Breastfeeding: a Guide to Weaning for Professionals, Supporters and Parents’, is out now.

You can get 10% off the book at the Jessica Kingsley press website, that's uk.jkp.com using the code MMPE10 at checkout.

Follow me on Twitter @MakesMilk and on Instagram  @emmapickettibclc or find out more on my website www.emmapickettbreastfeedingsupport.com

Resources mentioned - 

@babybegin on Instagram

@kinactive_kids on Instagram 

https://www.cwgenna.com/

This podcast is presented by Emma Pickett IBCLC, and produced by Emily Crosby Media.

Transcript

Emma Pickett  00:00

Hi. I'm Emma Pickett, and I'm a lactation consultant from London. When I first started calling myself Makes Milk, that was my superpower at the time, because I was breastfeeding my own two children. And now I'm helping families on their journey. I want your feeding journey to work for you from the very beginning to the very end. And I'm big on making sure parents get support at the end to join me for conversations on how breastfeeding is amazing. And also, sometimes really, really hard. We'll look honestly and openly about that process of making milk. And of course, breastfeeding and chest feeding are a lot more than just making milk. 

Emma Pickett  00:46

Thank you very much for joining me for today's episode. The title of the episode talks about torticollis and if that isn't a word you're familiar with, please don't worry, you're in the right place. Hopefully today we're going to do some explaining that may help you as a parent or help you as somebody who works in breastfeeding support. However, we're not just going to be talking about torticollis. But we're going to talk about some other conditions where essentially a baby's anatomy around their head and their neck might cause issues around breastfeeding. Now that's a topic that can take a year to learn about we're not talking about tongue tie, we're not talking about the anatomy necessarily inside the mouth. We're talking about what happens with with neck and head muscles. And I'm very honored to be joined by Nicola Walker, who was an infant feeding specialist, and also a senior physiotherapist from Somerset. She's got many years of working with families. And I'm also joined by Alessia Testa, who is a mum who had a baby with feeding challenges, which kind of connected to what we're talking about today. And I'm hoping that those two voices together will give us a picture about how we need to support these babies that have some of these struggles. So thank you very much, both of you for joining me today really on it. So Nicola, can we start with some sciency stuff? Can you explain what torticollis is for somebody who's never heard that word before?

Nicola Walker  02:01

Of course, I'll try my best. It's really lovely to be here with you both today talking about this torticollis it refers to a few similar conditions which belong to people of different ages with different causes. But today, we're talking specifically about congenital muscular torticollis. I know many parents, although advised against googling will probably want to Google this. And they'll find searches to do with adults, and children. So again, this is about congenital muscular torticollis. It's a common finding in newborns and young infants. And the statistics kind of show that it's between four and 16% of newborns. So it's a relatively common musculoskeletal issue, and is becoming increasingly more common as well. It can be a postural issue or a musculoskeletal issue. And it's when the muscles of their head and neck, particularly a muscle called the sternocleidomastoid becomes stiff, short and weak. And it results in a head tilt to the same side and a rotational preference to the opposite side. Sometimes there's a bit of a fibrotic lump that you can actually feel in the muscle belly, at the side of the neck, which is referred to as a sternocleidomastoid tumor, which is a very scary name for something that has absolutely nothing to do with cancer, it's a completely benign lump. So just to reassure parents there if they do Google, so quite often, this baby's tendency to turn their head to one side, and also tilt their head results in a bit of an asymmetry of their face on their head. Because their bones are so soft, at this point. So that can also cause lots of feeding problems and a few developmental issues along the way as well. 

Emma Pickett  03:48

Okay, so one of the things that strikes me what you've just said there, nicklen. And we're talking a bit more detail about some different aspects of this is four to 16%. That's that's loads, isn't it? I mean, that's, you know, that's what we generally talk about in terms of tongue tie. I mean, one of the one of the tongue tie statistics is, you know, roughly sort of four ish to 12% ish. So it's really interesting that everybody knows what tongue tie is the whole universe, the postman knows what tongue tires, but not many people realize that this impacts on babies and how common this condition is. So what that word congenital, that's just unpick that that means it's not caused by the environment, it wasn't caused by it. So lots of people think, Oh, my baby's got a bit of a tilt preference. That must be because in the womb, they were tucked that way. And that's why their head has developed that tilt, but you're saying congenital doesn't mean that it means something underlying? 

Nicola Walker  04:41

I think it's because with other types of torticollis, it can cause after trauma or an illness. So it's just trying to kind of relate this type of torticollis based on on what the kind of source of the problem is, and they don't actually 100% know what causes to torticollis, but they have a few best guesses. And one of those is the position in the womb, there's something in that a traumatic delivery, such as forceps and one tus can can impact and cause this issue. So I think it's more to do with the fact that something has happened in the womb or around delivery, which has then resulted in this issue. So I think that's why it's kind of, you know, it's called Congenital,

Emma Pickett  05:26

okay. So congenital doesn't mean, genetic doesn't mean passed down by through the genes, that Jenny word is misleading, nothing to do with that, and, and it quite often is about what's been happening just prior to baby coming out, so. So we may see, for example, a baby that's had a little bit of a birth injury, or maybe something's happened with delivery. And that could perhaps impact on nerves. And that may mean the baby tilts a particular way. But that doesn't mean that's going to be permanent, necessarily. But sometimes we're torticollis. If a baby tilts for an extended period of time, we're gonna get muscles shortening, on that side, where that neck muscles not being used, is that right? 

Nicola Walker  06:05

Yeah, that's right. And I think it's quite useful to think about where these muscles normally sit. And that might help listeners to kind of see how they function normally, and how a bit of a dysfunction can impact that. So with these muscles, you have one either side of your neck, it's the muscle that if you turn your head to the side, you can see a thick band of muscle, that's just sternocleidomastoid. So if you think about popping your index finger, on the little bit of skull behind your ear, and then your thumb in the little hollow of your windpipe, right at the bottom, by your clavicle, collarbone there,

Emma Pickett  06:46

I just did that in my myself. That was bad timing.

Nicola Walker  06:50

That's okay. So that is where the muscle sits on on one side. And then you've got, it's mirrored on the other side. If you think when you bring your index finger and your thumb together, that causes your head to tilt down, so your chin to tilt down to your chest. And then if you bring your your index finger and your thumb together on one side, it can cause a rotation and it can also cause a side flexion. So taking your ear down to the shoulder, if these muscles aren't working symmetrically, if they're not able to lengthen and shorten as they usually would if one's kind of hunkered down, and preventing movement, you can kind of quickly see how that that might impact on the function and the experience of the infant in terms of their development. So if they're kind of really stuck down on one side, it can cause that side tilt on the same side, and rotation to the opposite side.

Emma Pickett  07:44

And then over time, if someone didn't get help, it gets harder to resolve that if the muscle has changed, and there's been some sort of more, you know, significant shortening, and then that muscles, so when so I've seen as a breastfeeding supporter and as a lactation consultant, obviously, I have met babies that have this condition, and I've met babies that sort of pre diagnosis and have an asymmetry for other issues. So let's kind of brainstorm some of the feeding challenges that we're seeing. And I know we'll talk about Alessia stir in a bit more detail in a minute and really get that micro version but the macro version, I guess I would start by saying that everybody's a bit asymmetrical. Absolutely. And our breasts are and our nipples are and our babies are. So sometimes people are a bit freaked out by oh my god, my nipples are different shape on one breast and, and that must be what's it the issue is or, you know, I've got less dominant arm and that's affecting my positioning attachment. So we've got this kind of complex mesh have all these different things coming together that can make breastfeeding challenging, but one of the things you might notice is that your baby really doesn't like certain positions on one side really does not enjoy for example, you know, a cradle holder across cradle hold on one side, whereas they seem to be absolutely fine on the other. You might find the mum always has to do you know, rugby hold on that side. But you know, seems to be absolutely fine with that rugby hold on the other side, or a baby that seems to be tilting away from the breast or chest or doesn't seem to want to retain the positioning or or it's just really saw the baby's clamping down and, and maybe compensating because they're feeling pulled away from the breasts. They're using other compensatory measures like clamping down with their gums or we're using their tongue. And even with the best bit positioning, attachment support, you can't quite get the baby to do what they do on one breast versus the other breast and then you'll probably also notice that the nipple might come out misshapen or squashed. If you are trying to push through and when the baby's not feeding. You'll notice that that preference to to move to one side. One thing that you said to me Nicola is that when we've got a beautiful baby in front of us, we don't always see that tilt. We don't always notice that tilt. Tell me a bit more about what you meant by that. 

Nicola Walker  09:49

I think just in my practice working as a physio I think it's quite lovely in a way that we are so hardwired to think our babies are the most beautiful thing In the world, I know I've looked back at my, my three children when they were babies. And I think when they were born, I thought they were significantly cuter than looking back on the pictures. 

Emma Pickett  10:12

Hey, I know what let's obviously say asymmetrical babies are cute, too. But we were taught Yeah, we of course, we mean that. But we don't necessarily even see that variation from

Nicola Walker  10:24

I think, you know, if you think about when you have a newborn baby, there's lack of sleep, you're you're kind of getting over the delivery, and you're learning so much from from your new infants, that it's not always possible to see that there's a, an at this point, when they're very, very new, they might not have any asymmetry that you can really notice they're quite floppy, they're quite sleepy, that kind of asymmetry, you probably will notice from about two to three weeks onwards, you start going. Okay, I've noticed that I keep looking over to that side. And yeah, so when when I see parents in clinic, they often say that they didn't notice this issue from birth, it wasn't picked up from birth. And their clinicians haven't picked it up from birth, it's been about two to three weeks, they've just started notice noticing that the baby is either tilted to one side or looking around or has a preference to look around to the other side. So it's not something that's always picked up on and actually, parents often are looking back through their pictures, you know, they've got phones will have pictures of their gorgeous newborns, and it just kind of clicks with them. And they go, they're always looking around to that side. So yeah, it's it's definitely not something that's easily picked up on or you might have a maybe a notes outspoken on to the kind of says, Oh, your baby's looking around to that Simon awful lot. And you get. And so it's not always apparent to clinicians or to parents.

Emma Pickett  11:54

Yeah, yeah. And sometimes it is actually the feeding problems that are actually reveal it as an issue for the first time. One of the things that I've sometimes come across as if you're always used to holding your baby in a particular position, because you've got a dominant arm, for example, they might be looking up at you. And that, obviously, is where you'd expect them to look. So you may not notice it simply because they're always looking towards you as you hold them. And it may only be as the baby starts to be held a bit less and start to be put more on their back or on a play mat or in a chair. That's when you might start to see Hang on. Even if I'm not there. They're looking that way. So that's I think that's one reason why it sometimes takes a couple of weeks for people to notice. Yeah. So Alessia, thank you very much for joining us today. I know your son had the tumor bit that Nicola referred to, which is, as I said, Nicola said that rubbish word not helpful, must be super scary when someone diagnosis and uses that word. And you did have some of the challenges that we've just been talking about. Tell us about your son. 

Alessia Testa  12:52

So it's probably useful if I start from pregnancy. So I had a healthy pregnancy until about 28 weeks. And it was at that point where I kind of said to the midwife, oh, I don't think the baby's head down and she's like, No, you've got lots of time. I said, No, I, I'm pretty sure. Pretty sure the baby's like, I can feel the head in my ribs. And that went on for kind of a while. Until my 36 week appointment, and baby was still breech. So I think that was probably less than one is always go with your gut. 

Emma Pickett  13:26

Yeah. Was this your first pregnancy Alessia or your? 

Alessia Testa  13:30

Yeah, it was my first baby. So it took us a long time to get pregnant. So I kind of was in tune with my body, if you will. 

Emma Pickett  13:39

I'm impressed actually, a lot of people wouldn't recognize their baby was breech or so you obviously are someone who really isn't connected to your body. 

Alessia Testa  13:45

Yeah, I really felt it. And they just were like, Oh, you've got lots of time. But I knew it wasn't the case. I felt that Yeah. So by 36 weeks, he wasn't. And they confirmed it with a scan. And so I know, this is not about breach, but it's I think, for me, it's kind of connected and even some of the things that Nicola was talking about.

Emma Pickett  14:08

No, it is.

Alessia Testa  14:10

It helps to, I think, explain the challenges that we had in feeding him. So was booked in for ECV, where they tried to turn the baby and it didn't work. So at this point, you know, they kind of gave me the choice of a C section or bust. Unfortunately, and I didn't want a C section for a number of reasons. One of them being because I knew it could be much harder to initiate breastfeeding with a C section. But I guess I was told that they didn't have anyone who was who was skilled in breech delivery. So I went with the C section. It turns out at that point when I had the seat set Question. They told me I had, I'm probably not going to say this a bylo placenta, where my placenta was in to. So structurally, baby couldn't turn. He couldn't turn around. This is how I understood it. This is how it was explained to me. There was like literally like something blocking him from turning. So he got that big, you know, full term and then couldn't turn himself head down, which actually would explain, which helps to explain why later, he had that preference with his neck, because that's the way he was in the womb. I did literally everything to try and move him but he was not moving. And it made sense that he had that kind of blockage with the way that the placenta was was forming. So yeah, so the C section went fine. I got my immediate skin to skin. We breastfed immediately, couldn't wait to get out of the ward and go home. Cuz it's just the clinical environment just wasn't what I wanted. I wanted to be home alone to feed my baby. And kind of things went Okay, the first weigh in, I think he only lost 4% of his body weight. And we were exclusively breastfeeding. So a birth weight. So yeah, for me, 4% I was happy. 

Emma Pickett  16:20

Four percents great, isn't it? I mean, that's, yeah, both Nicola. I mean, you obviously really did get things off to a good start. And I'm, I'm really sorry that you didn't have the birth that you wanted, and that you were hoping for. And I can see from your face, that's still something that that feels hard to talk about. When you look back on that experience. Now, do you still feel that that sense of regret or did having some understanding of why he couldn't didn't turn help you? Or were you hoping for that that breech delivery with somebody who was able to support you with that vaginal delivery?

Alessia Testa  16:52

I think, for me, the most important thing was the potential lifelong impacts from mode of delivery. So I think I've come to grips with that I made the decision that was best for us at the time. And I've tried since tried to do everything I could to mitigate some of those things. So I'm, yeah, I'm happy with the decision that I made at the time, I've come to grips with it. I think it does help. It helped me to understand the anatomy, like the anatomy and why there were complications a lot. I think, for a long time, you know, I really struggled in that kind of the end like that. 36 To 39 weeks, just like trying to get everything to change and trying to turn in but not unhappy with the delivery in the end.

Emma Pickett  17:46

Yeah, I'm not a midwife, but I'm guessing that that placental position you're talking about, would have been a barrier to a vaginal breech delivery anyway. So possibly, if you'd been attempting that, that that could have been quite complicated, I'm guessing. Is that something anyone's ever talked to you about?

Alessia Testa  18:05

I mean, the conversation really went to, there's no one specialist in breech delivery. And actually, the midwife who was there when we tried to do that new CV was like, I've been a midwife for seven years at this hospital, and no one's ever. Everyone's just chosen a C section. I've never been, I've never actually seen a breech delivery. And that my confidence level just completely dropped. In terms of what was going on, and how and I knew, you know, I knew I could ask to change my care to another hospital. But it was my first baby. And I thought, actually, I'm, yeah, if I knew now what I knew that and I think maybe my choices would have been different. But you know, I can't go back to that. So I just kind of accept it. And I'm happy that we, we kind of I got the best birth that I could. And I asked for a lot. I asked for a lot in that C section room. And I think there was some give and take. But the main, the most important thing for me was that I had that skin to skin, and I could breastfeed immediately. And I got that. So so I'm happy. 

Emma Pickett  19:18

So only a 4% weight loss. You really did. I mean, you nailed it in terms of that early breastfeeding experience. Did you have any discomfort early on it? I'm guessing not if that was if the milk Milk transfer was that efficient, or how you feeling about your breastfeeding and your positioning?

Alessia Testa  19:33

It took us a while. I mean, there was no help in hospital. So it was just trying to basically just, I put him when I didn't know what to do. I just put him on the breath. I didn't know any better. We didn't have any, any help. But he seemed to be calm at the breast. In the first few days. There was no issues We I, you know, I felt my milk come in, he was taking he was kind of feeding on both sides. Definitely, you know, a preference for me in terms of where I was holding him. But in the first week, the nothing, there was no issues where the issue started was on day 10. On day 10, I developed a really sore pain lump painful lump. I was shivering. What I now know, I had developed with mastitis on day 10 On my left breast. And that was really scary, because that was still very early days. So at that point, I called the breastfeeding helpline called the NCT infant feeding line I called that's all you know that that's what the resources that I that I had. That's, that's all I knew about at the time. And they said, right, you should probably call your GP. And you should probably go check get checked out, because I had a red mark on my breast. And I was very engorged, like I said, still day 10 day early, and I went to the GP Oh, sorry. And so the breastfeeding health plans had said to me, you should continue the most important thing that they said that you should just continue feeding on that breast. Great. I was in pain, I was crying. I'm shivering. I was an absolute mess. 

Emma Pickett  21:32

I'm really sorry. Mastitis is no fun at any point, but especially data and when you're still recovering from a C section. Definitely no fun.

Alessia Testa  21:39

So I think at that point I was I was shivering so badly, I handed my baby to my mother in law who happened to be over. And I just said I need to go in the shower, because I'm so cold. And got out of the shower. My husband was on the phone trying to make me an appointment with the GP. And my mother in law said, Just give him a bottle. And I said, I don't have a bottle like I don't 10 days of feeding, I don't have a bottle. I said let me go to the doctor. Let me let me go to the GP first. I don't know what else to do. I didn't go to the GP. So I went to the GP and he said, Yeah, that's my situs. Here's your antibiotics. Take them. Now, of course, then by then I was feeling a little bit better. I was still on the pain medication from the C section. And I frantically started googling I thought, oh, no, it feels better. When I when I let him feed from that side. Let me continue. I didn't take the antibiotics that day, rightly or wrongly. The following day, was a Friday and I had known from when I was in the hospital, that there was a local peer support group. breastfeeding support group. So I said I want to go hopped in the car, on the way went. And I think this is where it massively kind of changed the course of where our feeding experience and what kind of happened next, because they were like, well, have you ever tried to leave leave back breastfeeding? What is that? No, I've never tried laid back breastfeeding. And that really helped because that's the left side was he wasn't latching properly on to that side. It was really painful for me to get him to latch properly. The other the right side was fine. But the left side was really, really painful. So we tried the lead back breastfeeding. And it helped clear that cleared the clog. They also encouraged me to take the antibiotics, which I did. So they were really, really helpful. And at that point, they just said, you know, the most important thing for you to do to clear the mastitis and to get him to is to just keep going on that side keep keep swapping, keep swapping. So I did and we kind of moved on from that.

Emma Pickett  24:11

So Nicola, just to just go back a little bit more to talk about some of those breastfeeding issues. So obviously Alessia had her mastitis, which I think we can both see how that would have been connected to less effective milk transfer. We're talking about pain on the breast What else might we see happen if someone had does have a baby with a with a turning preference, what might happen to that person's breastfeeding?

Nicola Walker  24:34

So I think to start with, one of the most commonly seen things with everyone, regardless of torticollis is is a painful latch. That is often a reason why people cease breastfeeding anyway. But with torticollis it seems to perhaps be more more one sided. You might have nipple damage as well. I know a parent I saw recently who's given me permission to talk about her experience. Her nipples were so severe They damaged. And then from that she then got mastitis because of the ineffective milk removal on the one side because the latch wasn't so great. Also, if you think about where these muscles are, sometimes the chin is a little bit more to the chest. So getting a wide gape, and getting the head to tilt back can be a bit of a problem. So shallow latch as well, is is often an issue. And then kind of all the things that happen as a result of those initial problems, you know whether that infant has poor weight gain, because they're not able to remove the milk. So well if the mums milk supply starts to go downwards, as a result of that milk not moving. So it's kind of a bit of a knock on effect, as well. So I think getting that skilled Lactation Support alongside the treatment in terms of Physiotherapy is really, really essential. And if they can work together even better if you've got some way that you've got an infant feeding service in your local NHS that can work with the physiotherapists. Even better, it's never happened in my experience, but you never know. Because it might just be what Alessia said of getting creative with positioning and one side you might be able to do cranial hold. And then the other side, you might have to do both behold, you might have to do some kind of weird koala laid back position, you might have to do your stretches prior to latching your baby or not preempt the baby needing a feed and doing the stretches, you know that the physiotherapist is showing me.

Emma Pickett  26:35

So doing the stretches just prior to a feed can make that feed a bit easier?

Nicola Walker  26:41

Absolutely. And I think it just frees up the baby's neck to move. And because their chin is often a bit closer to their chest, sometimes I find that laid back position is quite hard because they have to tip their you know, they naturally have to lift their chin and jaw to then attach on to the breasts. So that can be a little bit tricky. So if you're able to get creative, maybe lie the baby on the side on the floor in front of you and use a toy to get them to track looking up. So for the following a toy, it's just natural ways of getting the baby to move their head and neck and just freeze everything up makes it all nice and loosey goosey. And then hopefully that should make the positioning and attachment a little bit better. Sometimes, things like hip dysplasia is a bit more common with children with torticollis as well. So if you've got a baby, like a baby, I've recently seen who's in a hip brace and has a torticollis. Sometimes you just have to make the best of a tricky situation. So that kind of typical stuff we're told in breastfeeding support about keeping the head in line with the trunk and the hips and keeping them close, you kind of maybe have to have a little bit of a give because not all children with torticollis will have their head turned completely round to the side, it might just be that they're kind of position they rest in is slightly off midline. But as you said those millimeters really, really count in terms of London, lining the baby up and getting them to feed. Well. We know that if you drink from I remember doing my breastfeeding support training several years ago, and the person who taught us said if you try and drink from a straw, and it's in the middle, with your head slightly tilted back, it's a lot easier than if you've got your head completely turned around to the side. And it's true with feeding as well. So try and get the best position possible in the head and midline. I like using things like rugby hold because I think you can use gravity to your advantage, which will tip their baby's head back. You know what you're handling so that the baby can tip their head back. But if you can use gravity to assist you because it is quite a coordination. skill to be learned for the parent as well use gravity use whatever position you can and get creative. There's a few resources online, which suggests that with that, that played your carefully sometimes you get that facial asymmetry that I mentioned as well, you might have a jaw that slightly juts forward on one side, a cheekbone that juts forward on one side and a forehead that juts forward on one side. That sounds a lot worse than what it actually looks like in your baby. So don't be too scared. But that kind of asymmetrical jaw can also make the latch a little bit trickier to achieve. So there are resources out there that will give to you Emma, which suggests a very, very soft methods of trying to improve the latch and trying to approve improve the seal of the baby on the breast as well. So I'll talk to you about that and then as well.

Emma Pickett  29:47

Cool. So you're about to send me some stuff to put in the show notes. Is that the plan Perfect. Okay, that was super helpful. Thank you very much, Nicola. So yeah, I mean, it's getting it's getting the right support at the end of the day. No one's expecting anyone to be able to do this all by themselves. But yeah, there's obviously a lot that can be done and I liked what you said about it. Sometimes it's just making the best of it. It may not look like the little NCT video, your child's latch may not look, the perfect A plus latch, but it's just about maximizing and getting it as effective as it possibly can be.

Nicola Walker  30:18

Absolutely.

Emma Pickett  30:21

A little advert just to say that you can buy my four books online. You've Got It In You, a positive guide to breastfeeding is 99p as an e book, and that's aimed at expectant and new parents. The Breast Book published by Pinter Martin is a guide for nine to 14 year olds, and it's a puberty book that puts the emphasis on breasts, which I think is very much needed. And my last two books are about supporting breastfeeding beyond six months and supporting the transition from breastfeeding. For a 10% discount on the last two, go to Jessica Kingsley Press. That's uk.jkp.com and use the code MMPE10, Makes Milk Pickett Emma 10. Thanks. 

Alessia Testa  31:09

My son's six week check. You know, I had mentioned at the GP that I had most of my status. This, of course, was a different GP, I had no status. And he said he was feeding going, I said it's going okay, but I still struggle with the left side like he's really the pain, the latch is still painful on that side. 

Emma Pickett  31:30

You're still painful at six weeks that's going on and you were having to use that, that different position on that side to get any feeding happening effectively. 

Alessia Testa  31:38

So I could hold him like a cradle on the right side. But on the left side, we always do the laid back. And he was still so small. So it was it was kind of just like holding him laid back on the bed, feeding him on the left side. That's all we could do. But it was at that point where I think I'd looked back on photos. And I thought he was always strapped struggling to turn his head right. His head was always left in photos. And and that's where it gets confusing when I'm like looking at photos. And which side is he on?

Emma Pickett  32:12

Stage Left stage right stage left? Who knows. But he was turning away, and that was that.

Alessia Testa  32:17

Yeah. And I only noticed it at that point. It was after the weeks and like good looking through the photos that I said, he always turns his head that way. I've always thought that pain on the one side and things started to like make more sense. I mentioned that the six week check in the GP said no, he's fine. He's putting on weight. He's alright. Don't worry about it. So I didn't. A week went by. And we were playing he'd spent more time on the floor. Hated tummy time was like, absolutely hated it. And I looked back on more photos, I said, This isn't mine. I'm gonna go to the GP. Again. I'm in another appointment. And again, this is where it was really about me like going with my gut. I said, he's got something he's not. He's not turning his range of motion isn't great. It's not good. And he said, No, he'll be fine. Just keep going. Just keep doing tummy time. Keep feeding on both sides. He'll be fine. He'll be fine. I said, I don't think so. Can I have a referral? And I asked, I asked out right. I said, Can I have a referral? Because I don't think some I think something's wrong with his neck. And I'd been googling and I'd seen toward a folder called list. I wouldn't say it right. torticollis?

Emma Pickett  33:34

Like, I can't say the name of that the name of the tumor sterno Clyde? No, no, I've got to try that one.

Alessia Testa  33:41

And the GP said, No, he's fine. He doesn't have a flat. He doesn't have any flattening. He's fine. And I was doing lots of baby wearing at the time. So I don't know if that made a difference. But he's always being held. So maybe that helped us because he was only turning to one side. He didn't have the flattening, which is what the only thing the GP seemed to be concerned about. So I just said no, can I have a referral? The GP said, Well, it's gonna take it's gonna take a year to get to see a pediatrician. And I was like, Okay,

Emma Pickett  34:15

that is horrifying. Oh, my God, that is horrifying. This. Can I just pause for a minute and say this is the story of maternal instinct here. This is I mean, yeah, I mean, you were doing such an amazing job not accepting someone saying yes, it's fine. I don't believe that. I mean, I find that very hard to imagine that. It's a year to see a pediatrician that seemed that that's someone trying to fob you off, isn't it? I mean, that feels what it feels like to me.

Nicola Walker  34:39

I think the other thing is that you don't need to see a pediatrician. You can go straight to a physio through the NHS, a pediatric physio is no need to go all around the houses, you can go directly to the source, which is really disappointing that you've just been fobbed off.

Emma Pickett  34:56

So he said, You've got to wait a year to see someone what happens now 

Alessia Testa  34:59

so I ask for an open referral. And we went to so my mother in law works at a private hospital. So we paid to go see the pediatrician, because I just felt like something was wrong. And I, you know, and I just said, I want to go, you know, I want to go speak to someone, and I appreciate that, you know, not a lot of people, you know that it's not an option available to so many people. And that's where I feel, you know, very lucky that I could make that decision. So we went to go see the pediatrician. And she said, Well, again, she said to me, he's fine. He doesn't have a flathead, everything's okay. And I said, I don't think so. She goes, Okay, well, if you're not sure, it was it was if you're not sure, we'll send him for a ultrasound on his neck. And at this point, yeah, so he was about 10 weeks, 1011 weeks old. And we now he was a bit bigger, more sturdy. So we had kind of transitioned away from the laid back only breastfeeding to the football hold. We tried some other other positioning. And so we went to the ultrasound and came back, and she said, Uh huh, you were right. He has a stern. I'll say it wrong. He has something called a sternocleidomastoid tumor. 

Emma Pickett  36:35

Nicola, we need to help her. How are we going to pronounce this ?

Nicola Walker  36:37

sternocleidomastoid

Emma Pickett  36:41

and those are lots of words that mean different bits of the body, are they? So sterno sounds like sternum Kaleido

Nicola Walker  36:48

is clavicle and mastoid is the little bit behind your ear where it attaches.

Alessia Testa  36:52

Okay. So all I heard was tumor. I'm like, Oh, my gosh, what what is wrong? But she explained, no, you know, it's not cancerous. Don't Don't fret about that. It just means that there's tightening. This is how the pediatrician explained it. It just means that there's tightening in the muscle. And she asked at that appointment, this is the follow up after the after the ultrasound. She said how's the feeding going? And I said, Well, it's going okay. You know, he's still gaining weight. He's still happy. You know, she goes, Well, I think at this point, she's Oh, you're not? Are you keeping him in in that one position? Like for a long time and go well? He feeds however long he wants. He's a baby. And she was oh, no, you don't? He's like, he's, I think, yeah, 1011 weeks at this point. Oh, no, he doesn't need to feed more than like 1015 minutes on each breast. Not just like, okay, all right. Thanks.

Emma Pickett  37:47

It's she's not implying that a long feed is causing an issue is she is that what the implication that's

Alessia Testa  37:53

what I got from it, that he was being held in that position against like, turning his neck so therefore, that was causing his him pain. And that was affecting his latch.

Emma Pickett  38:05

If anyone is listening to this and has a baby that feeds for, you know, 45 minutes, 50 minute an hour comfort feeds cluster feed. I mean, that is absolute Balderdash, isn't it? I mean, please, please, nobody ever think that that's what causes a baby to have a congenital tumor. I mean, that's just bananas. And I'm really sorry that that was the information you were being given.

Alessia Testa  38:25

I mean, at the time, I think I just, I knew it was nonsense, because at this point, I was like, okay, yeah. Thanks. And I didn't really listen to it because I knew he was happy. And I knew that some feeds were 10 minutes and some feeds were 45 minutes. And that's all right. So she did refer us to a physio. Yeah, finally, we got there. And we saw the physiotherapist on a monthly basis. So from when he was three months old, which, you know, physio on a baby, you think what are they going to do, but it's just little exercises that we had done. Around the same time. I also visited the peer support group again. And they knew that we were still having kind of struggles with the lodge. And they kind of gave me two suggestions. One was to go see, there was some funded places to speak to an ibclc funded places where I live in Essex at the time to maybe help with with that, because I was just so afraid of getting my status again, I was so afraid that, you know, our feeding journey was gonna end. He was getting really fussy. He was kind of out that three, three and a half month mark, which I now know is common for babies to get really fussy at that time, they get more distracted. So the suggestion is to speak to to the funded ibclc which was great. And then to also perhaps check out cranial osteopath alongside continuing to see on a monthly basis the physiotherapist?

Emma Pickett  40:06

Can I just pause here for a second Alessia just just Nicola, can I just ask you about cranial osteopathy versus what a physio might do? What would be the difference in those roles? And how might they work differently with a baby and the situation.

Nicola Walker  40:21

So I can only really speak from physiotherapy. But our process tends to be that we do an assessment on the baby, which will take about an hour, we'll look at lots of things. And we'll screen out lots of red flags that may indicate more serious pathologies. And we'll look at the baby's development and all those kinds of things to put together this picture of how this child is doing. And we'll probably some physios like to take a photo, because as you say, Alessia the actual logistics of right and left. And, you know, it's a complicated condition. So even we sometimes like was it why was it left. So it just helps us to kind of tune into what that baby's experiencing. And then our treatment strategies are around education, for parents and kind of changing the environment around the baby and a bit of a 24 hour kind of postural management type of visit type of intervention. So making sure that that child is always been encouraged to look to the less preferred side and position their world. So there's interesting things on the less preferred side as well. And then, also, alongside that, we'd do some hands on stretches, depending on that individual child's needs. In terms of cranial osteopathy. I don't know an awful lot. Lots of people swear, it makes a huge difference I know with with my own child when I was very, very desperate. And there were lots of things going on. And I was kind of not really sure where to turn to I went and saw a cranial osteopath. And I personally couldn't make sense of it from my own physiotherapy perspective. I don't know what the evidence is like for it. So I can't really comment but everybody should have access in the UK to a pediatric physiotherapy service who are a specialist service with, you know, particular training and experience in, in children because they're not just many adults. They have their own physiology, which is really unique to them. So you want somebody who really understands children. I think I am obviously biased in terms of physiotherapy, because that's, that's my background. But sometimes I find that having having physiotherapy which is situated in the NHS is quite nice, because often it's part of a specialist service where I worked, we literally had the pediatricians next door. So if I saw a child, and I thought, I'm not quite sure that this is normal, I think I just want to go and have a word with the pediatricians, I can literally go next door and have a word, we use the same clinical report systems. So if I see a child, the GP can see what I've said, it just makes kind of working together, you know, really nice and easy. And if I write a report about a child, it goes to their GPS, it goes to the health visitor, it's a nice joined up way of working, whereas a parent would have to ask for maybe a cranial osteopath to be copied into a report if if they wanted to see it. So that's just worth noting that if you want that cranial osteopath to be part of their care, you might have to make a bit more of a special request to the to the GP or the physio or anything to include them within the within the child's care so that they get notified about it.

Emma Pickett  43:47

I've obviously worked worked with lots of families over the last couple of decades and, and I have definitely found families that have really valued cranial osteopathy and really felt it made a difference particularly around other issues like tongue tie or, or post birth, trauma or injury. But I think you know, the best cranial osteopath is not going to say yes, I'm the person who's going to help you with your your tumor, the person who's going to help you torticollis they're going to be as part of a team which will need medical care as well and we'll be looking at the whole story. Let's see when you were meeting with the cranial osteopath, crane osteopath, what were they doing different things? So obviously, the physiotherapist is doing a little bit of the stretching stuff, but a lot of their stuff is about what you're doing at home and talking to you about what you're doing with your son. How did the cranial osteopath work differently?

Alessia Testa  44:35

So I think it's a lot of what what Nicholas you know, my experience was a lot of what Nicholas said so you know, the, with the physiotherapist we talked a lot about okay, everything you do is on the opposite side, sort of switch everything and that included like keep my son was in a next to me pot and I hadn't even thought of things like that, switching it over. Whereas what with the criminal Ostia Ha, she kind of I mean, we only saw her I think once or twice. And she kind of like did a little massage type situation on his neck, felt his head told us mainly that he was What did she say, like, imbalanced on one side? I mean, I don't. I'm one of those people that like, I didn't see that it was going to hurt him. Like there wasn't gonna be any any sort of, you know, it couldn't hurt him in any way. So I thought, Well, why not try it? So we only saw the cranial aspect twice, whereas we were going to regular monthly sessions with the physiotherapist who was showing us you know, what exercises developed? Or I should also say, what developmentally age appropriate exercises, you know, so as he got older, what we could be doing that would help him the the head tilt preference, whereas the cranial osteopath just did a little massage felt his neck felt is the back of his head. Yeah, so I couldn't really tell you the detail.

Nicola Walker  46:04

Yeah, I think as well, Alessia is interested in what you say, in your experience, I think what we're talking about here, with this sternocleidomastoid muscle is shortened, that the muscle has changed. If you imagine it like a big elastic band, it's now shortened. And because it's in that shortened position, it's actually quite weak, it's not being used nicely. And it's not allowing the other side of the neck to move. So in terms of what we do with a short muscle is we stretch it. So those stretches that you were given, is kind of a direct target to lengthen that muscle on that side. And then I enable the other side to become stronger. I think, I totally agree with the fact that, you know, after labor and the position in the womb, in terms of bodywork, there might be some need there. But I think, if you cannot afford or if you can't access a cranial osteopath, I think physiotherapy, on the NHS, or privately or whatever you choose to do is more than enough to, to kind of tackle this problem. And I think as well, it's not just about the neck and the head. And given a massage or a stretch, in that moment, it's the 24 hour management of that child. And then also, as the child grows, you sometimes see a little bit of a regression. So when the child you know, has a little bit of a growth spurt, or they start to develop a new skill, so they start sitting there, now, they now have the force of gravity on them. So their head tilt might be a bit more prominent. And you know, you can see at these different stages, you might just need to check in with your physiotherapist. So developmentally, you can practice exercises, which then lengthen, so by stretching your arm up to reach for a toy above the child's head, it will naturally lengthen that side. So it's from a developmental perspective, as well as the focus in on that, that muscle being problematic. It's, it's looking at the whole picture, and then following that child through to make sure that they meet their motor milestones, and develop symmetrically.

Emma Pickett  48:10

Yeah, so. So you were given stuff to do at home. Let's say you're moving, you move to the next to me cot. Talk to us about some of the other things that you remember doing what were some of the other activities that you're doing with him? So I don't know your son's name, you're okay to give me his liquor.

Alessia Testa  48:27

Yeah. So it's, as Nicholas said, I think, you know, as he kind of met those milestones, so, passing him toys on one side and switching as he learned to sit up, coming, walking towards him on one side, and the other kind of doing an equally as he started to crawl, as he was, started to pull himself up onto furniture, making sure that there's you know, toys on the floor, so he could like bend down and move, pulling himself up. Same thing, it's, you know, she explained that the physiotherapist was very good at explaining, you know, what to look out for next and what I could see in terms of his physical development and how that was being manifested, like with his condition. So I think that those were just things like passing toys, pulling up and pulling down. She explained, you know, we could be doing like, little baby exercises. So we're on pulling his left foot right arm together and making a little game out of it and doing the opposite side as well. And just just things like that, that were really simple. And but I think when you when you don't have experience so that when you you know you, I'm not a medical professional, I don't know. I'm just you know, a mom with a baby. It really helps to have that time and that space to discuss those. Those more For skill development with him with her. You know, Angela was great. I have nothing but, you know, we developed a really fabulous your physiotherapy enjoys the physiotherapist, she was amazing. Shout

Emma Pickett  50:13

out to Angela.

Alessia Testa  50:14

And we saw her monthly from Yeah, three months until Luca a week before his first birthday when he was discharged, because he she was very happy that he was meeting all of those milestones. And you know, there was, yeah, he was completely discharged. She's fine. Now. There's no, you know, he doesn't he's lost that preference. We don't have any feeding issues anymore. In fact, he like loves both sides.

Emma Pickett  50:45

How did your feeding continue? So I sort of slightly interrupted you to talk to Nicola. But when you when you first started to see, Angela, you're still in pain at that point at that sort of three month mark, how did things go with your pain and your feeding. 

Alessia Testa  50:59

So as he as he got bigger, and as he kind of, we made those very subtle changes, like reading a book on one side coming, switching, who's next to me, doing those kind of subtle changes really did make a difference. And we moved into the cradle hold and transitioning, like I mentioned, also, we spoke to an ibclc. And one of the first things she said when she came into my home was he's too big, get rid of that pillow. Bring him closer to you. So I had gotten into this position where, you know, I was holding him in a certain way. And he was growing, and I wasn't adapting my positioning. So she was really good at just making those subtle changes like that pillows. Yeah, he should doesn't need to be on a pillow. Alas, yeah, bring him closer to you move him closer to your belly button. And just those subtle changes really did make a difference. Even on that side that was, you know, more uncomfortable. It's now both of them, you know, are equally they've all they've been for a long time, as comfortable as as they could be. But she really helped to just make subtle, very subtle changes. And as he's gotten stronger and bigger, it has helped. But yeah, I'm I switch sides more often more frequently. as well. I don't know if that makes a difference. But that's what we do. And it works for us. 

Emma Pickett  52:26

So yeah, yeah, what you're saying about those subtle differences, I think really, is really helpful to remind people because every millimeter counts. And when we've got something else physical going on, you know, they're it's a high palette, or a tongue tie or jaw asymmetry, or whatever it is, you can't waste millimeters. So you know, tucking a baby closer, getting that bottom cheek close to the brass, making sure you haven't got clothing between you, you know, moving that padding out of the bra that often causes a shallower latch, all those things can can really make a difference. And you've got no more mastitis that was only the one knock on wood. 

Alessia Testa  52:57

But I that was the only in instance and I have been vigilant because I think because we identified that there was an issue. I was able to kind of say, okay, he's got, you know, this condition that is affecting it. Let's make sure that I'm constantly feeding I'm constantly switching so that he's not uncomfortable. And I'm not uncomfortable because that that when I got that my my status, it felt like it was like, almost like a milestone for me as a mom, because it opened the door to this world where you know, the first, the first thing that I was told, will just go to formula. Or he's fine, nothing's wrong with him. Maybe it's you, you know, when actually, I just had to go with my gut and just say no, like this, I know my baby. I am confident in my decisions, which is tough to do when you're a new mom, like no one really tells you that style. But then it is the little things were 

Emma Pickett  54:05

You definitely made to happen. 

Alessia Testa  54:08

Where someone says to you, hey, you're doing a great job. But why don't you just move that pillow out of the way a little bit? Or, you know, try and lead back breastfeeding? I'd never heard of it before. Because I didn't expect to have these feeding issues. I didn't expect. I don't know what I expected. But I didn't expect to have a son who was going to have a head tilt preference. Yeah.

Emma Pickett  54:29

Yeah. Thank you so much for sharing your story. Let's see. Can I just ask you, Nicola? I mean, it was three months before Luca got to see Angela. Angela from Essex the physio Is that Is that normal? I mean, are we ever worried about it being too late? I mean, if someone didn't get to physiotherapist until seven months, I'm guessing that's a very different story from from a 10/12 week experience.

Nicola Walker  54:54

Yeah, well, we we have found and there's lots of studies on this at the earlier this year. is identified and referred. And we can do those really easy measures that Alessia has talked about, the quicker this results. And I find that from the point of referral, when I first do my initial assessment with an infant, by the time that I'm seeing that, that I tend to see, do the initial assessment, and then I'll see them within two weeks, just to make sure that the parents really understanding what I've said, because you know, it's an absolute huge amount of information to learn about their, their infant and stuff, and they might just need a recap, and just to check the stretches and things, you know, it's worth getting it right early on, and then the parents need you less and less I find. So once I then do a check in four to six weeks after seeing the, the infant, there is a noticeable difference in how well the child's moving and the parent reports that you know, they feel empowered, and that they're managing it well. And they've noticed changes, you know, it's generally a positive picture. And the sooner we can get in there, the better. I think it's also worth PJs think about an infant's development, in general, doing a stretch on a two week old baby who is sleepy and quite easy, easygoing, in a lot of respects is a lot easier than doing it to a seven month old child who might be a bit more able to communicate to you that they're not so happy about being laughed about with with their head. And whilst we can do things to encourage a child to rotate their neck round and look to the opposite side, by putting in a, you know, an interesting sibling or toy or whatever, there, it's much harder to do the tilt, it's much harder to try and get a child to tilt the opposite way. Because it's not a very natural movement that you can kind of encourage without that hands on stretching and things. So it's just easier if we can get in there sooner rather than later. And in terms of developmental progression through their gross motor skills. If you can catch an infant, before they've really started moving through those, you know, bigger milestones like rolling and sitting and things, you can kind of change the course of that child's attainment of those skills and kind of just get them on the right footing to begin their journey through their their gross motor skills. So I often find children who are found a little bit later, it might be that the parent comes to see you because they've got a hand preference, and no child should have a dominant hand, you know, really before their their two or three. And so quite often you you have a parent who says, Oh, my child's not using one of their hands very well, but they're using the other hand really, really well. And it's often because you know that, on the side that shortest and tight, the child isn't really looking at that hand. And so their experience of their world and their, their development, kind of all focuses on the hand that they're looking at. And they've even seen this in studies several years down the line, the hand that the child looks at tends to be their dominant hand, you know, all those years ago. So it really has big implications for how the child picks their their milestones.

Emma Pickett  58:15

That's interesting about the hand thing, because a lot of people think, Oh, he's left handed, as you can tell already, he's left handed. But actually, there's something going on there. And that isn't the case for a baby. If someone's listening to this, and they've got a 16 week old, and they're thinking, Oh, hang on, hang on. We've just we just assumed that there was a little bit of a preference and it wasn't a big deal. And actually, I have always been a bit sore on that side. And Yikes, maybe this is my son or my daughter that went with this podcast is about what would you say to that person? If they're sort of worried that they're maybe they've missed a window?

Nicola Walker  58:46

Okay, it's never too late. I I've seen children who are 16 months old and their parents come to me, it's it's harder. But you can't sit on this. If you notice a difference or you have a concern, do what Alessia did and advocate for your child, even in the face of people trying to knock you back. You know, your child. And, you know, if if you feel that there's something underlying that's not quite right, really push to get to the right, the right source and many services around the UK will let you refer into physiotherapy yourself. So you could self refer you don't even have to go around the houses to your pediatrician because there's huge waiting lists or your GP than the expert in these conditions. It's going to be physical therapists. I've had also GPS who've never seen a state of flux sternocleidomastoid tumor or head turning preference before and have alarmed the parents and gone right we need to send you to hospital and things. So if you can refer into your local service, just do a Google search and find out some services also have a phone line that you can bring into and just have a chat and determine if this is the right route for you to go to. But I'd say my my main message is don't sit on this. Get help early and the earliest You can get help, the better the outcome. And even if it's quite late on, once the child gets, you know, their hair grows and stuff, you can really not see much of a difference or an asymmetry in the head or the face as much. And we're much more concerned with function than how it looks. So, physios will always focus on how well that child is moving and their range of movement of their neck. And it's never too late to, to be concerned about that or to flag that as an issue and the physio will work with you to kind of achieve any goals that you have.

Emma Pickett  1:00:36

Yeah, thank you. I think one thing I'd like to say, for anyone who's listening as a breastfeeding peer supporter, we are definitely not medical professionals. And we're very much in our training encouraged to not put labels on things or, or make comments that feel outside our remit. But if you are working with a family, and one side is tricky, and you're seeing turning preference, how could you word that if you were talking to a parent, and you and maybe you've listened to this podcast, you're thinking, Oh, hang on, this is maybe what Nicola was talking about? How would you start that conversation with a with a parent?

Nicola Walker  1:01:11

I think just just saying, oh, have you noticed that the baby tends to look on one side more than the other? Or have you noticed that there's any facial asymmetry, because that's the other thing that I'm sure we'll go on to is that torticollis kind of works hand in hand with another condition called plagiocephaly, which we're gonna talk about later. So you might see some changes, very, very subtle changes in the infant's face that you, you know, you wouldn't notice unless you're looking for them. So and then there's a few risk factors as well to kind of speak you know, to be aware of so as Alessia said, first baby where everything's a little bit more cramped up, it's more common with in breech babies as well. If you have a condition where you have less water, amniotic fluid, as well, it's more commonly seen and in in premature babies and in multiples as well. And it's just thought that there's less space for the baby to move, they've probably been wedged in a little bit. So if you know that the background of that pregnancy or the method of delivery might have been a little bit rough for the mum and for the baby. Those are kind of little hints that this could be, this could be something that you need to look out for. And I think most parents are, if they come to see you, because they're having feeding problems, they are just desperate for a solution or for some ideas or answers. So whilst you don't want to label it as a torticollis, you could, you could just say, have you noticed that your baby tends to look one way more than the other? And I think a parent would be probably Oh, yeah, actually, I'll look back at photos. And it might just trigger something in them to go Oh, yeah, it might be that. 

Emma Pickett  1:03:01

Yeah, it's about supporting the family, isn't it? So you don't hold back on some information that is potentially going to be life changing? Because you're a bit worried about being out of remit to say to a parent, I've noticed this, have you noticed this? I'm just wondering whether it might impact on feeding because I have heard that sometimes it can I wonder whether it's worth a conversation, the conversations that Alessia had with her GP and her pediatrician, obviously, beaming completely Oh, everything's fine baby's putting on weight, not a problem. It's so often people have told oh, your baby's putting on weight doesn't matter that they've got you know, 20 legs and green starts flying out their eyes. It just seems to be that that's a such a dismissive thing for someone to say. But they were very focused on this flathead, that was something that everyone kept talking about. Tell us a bit more about some of the other conditions that we could be talking about. 

Nicola Walker  1:03:49

Yeah, so plagiocephaly is a fancy word of saying an asymmetrical flattening to the back of the baby's head. So if you think about your lovely baby, if they always say looking to the right hand side, they're more likely to get a flattening at the back on the right hand side, based on the surface and the pressure of their head on on the floor that they lie in, because they're, you know, they're always looking over to the right hand side. At this stage, baby's heads are really moldable and really soft, that you've got those plates of the skull and sutures of the skull so that when a parent gives birth to their baby, their plates of their skull can kind of overlap and move to enable the baby to fit out of the birth canal. That doesn't really kind of harden up until the child is about 18 months old. So you've got all that time in which changes can be made to the child's head and neck and with such a rapid period of brain growth. The baby's head will grow and you notice the brain and the head will mold into a more rounded shape with the right into intervention, but these two conditions go hand in hand, the torticollis and the plagiocephaly. It's a really common correlation to have both. I will say, though, just picking up on what Alessia said about there not really being much flattening in your baby's head, I have found with breastfeeding families, that flattening doesn't seem to be as pronounced. And I'm not sure if it's because, you know, maybe those breastfed infants are in the mother's arms a bit more being fed, if there's more likely to be things like co sleeping, if, you know, there's there's the potentially lots of reasons why, but I find that babies who receive bottles are, are more prone to the flattening, and that's not that breastfeeding infants don't get the flattening as well. But I'm not sure if the practices around breastfeeding mean that the child tends to not have such an obvious flattening to the to their head and maybe less of an asymmetry at times as well. 

Emma Pickett  1:06:03

Yeah. And whatever the baby wearing was a factor for Luca as well. Yeah, obviously, the Luca probably didn't spend a lot of time flat on his back and was obviously being carried and baby worn as well. 

Alessia Testa  1:06:13

He refused to go down anywhere. So he was always held.

Emma Pickett  1:06:19

Yeah. Are there any resources that either of you would recommend for either sort of breastfeeding supporters or, or parents anything that you found useful on your on your travels last year, and

Alessia Testa  1:06:29

I didn't really find this community of kind of breastfeeding moms on Instagram, until late, I would say my son was about six months where I was like, oh, all the things I questioned are normal. I just wasn't following the right people. So Instagram, I love your podcast, I listen to it all the time. And a lot of the time, especially now that my son is 13 months old, and we're still breastfeeding. We're now getting the questions about oh, you're still breastfeeding, and why you still a baby? Also, none of your business. And now I have? No, I have that resource. So I'd say yeah, if you aren't face to face, check out a local support group, live actually online, like the website I find useful, really helpful. And then on Instagram, and podcasts, like yours are great for kind of just easy listening. And to know that, you know, if you've experienced it, other moms have probably experienced it, you're not the only one. And that there is help, you just have to advocate for yourself, I think even more so now than maybe in the past. And I think also, culturally, because I, you know, I am not from the UK, when I spoke to my family back home, then also kind of going off off topic a little bit, but speaking to people like there is help, it's just maybe the people that you're speaking to haven't had that experience before are there because they don't breastfeed or because there's their child didn't have a head tilt preference or because, you know, they have other health conditions, whatever it might be, just talk about it, and someone you know, might know or someone you know, might be able to refer you to, to information that will be helpful. I should also say the NHS website, health pages can be helpful. But I think sometimes they're written in a way that maybe isn't, isn't as useful as you want it to be. At three o'clock in the morning, when you've got a screaming baby who will only feed lying down on one side.

Emma Pickett  1:08:49

Yeah, but there isn't the sort of magic article on sternocleidomastoid tumors, there's not going to have you know, so maybe we need a lessee has experience with Luca as article number one that we can get up the search engine rankings. And yeah, if you ever fill up for sharing your experience less I'm sure that what no pressure or anything since we're on a podcast but you're on the spot. Nicola, any resources that you you would recommend for parents? 

Nicola Walker  1:09:17

there's there's a few I think, what I find frustrating as a breastfeeding worker and also a physiotherapist is there's individual information about each thing but they don't kind of mesh very well together. So it's quite hard to get the information that you need. If you if you Google a PCP, it's physiotherapist association for pediatric physios. They do have a little leaflet for parents which is on head turning preference and plagiocephaly which gives some kind of generalized information about what what the conditions are and what you can do soft things that you can do To change the environment and start to make a change, I think it's currently up for review at the moment. So I'm not sure if it's on their website at the moment. There's also lots of information if you search in Instagram for normal developmental, gross motor milestones that children achieve and physiotherapist accounts which are quite useful when you're a new parent and to kind of give you a bit of a marker as to what your child should be achieving.

Emma Pickett  1:10:30

When I ask you for some favorites, Nicola, and I'll pop them in the in the show notes. Yeah, okay. So it sounds like I mean, from what I'm hearing from you, there isn't necessarily, this is the place you go if you know if someone tells you your child has torticollis. And breastfeeding is a challenge. It doesn't sound as though those resources are out there. So pressure on both of you that come on Nicola gaps to be caps to be filled. Yeah, and I actually one of the things I'm feeling from this conversation is, we need to get the breastfeeding supporters and the physio therapists together and have some conversations. So let's get physiotherapists doing study days for breastfeeding supporters and making sure that they're aware of how the worlds come together and connect and vice versa. 

Nicola Walker  1:11:10

I mean, your experience of the physiotherapist you have we have we are not required in our education or in our workplace in the NHS to do any breastfeeding related courses or, you know, get up to scratch with what you need to be able to breastfeed successfully and successfully and the positioning that you might need to get that. And it's quite a skill to be learned. So if a physiotherapist who's telling you are well actually your baby's looking right and left, they probably don't need too much intervention. Well, if the mom is having functional difficulties with breastfeeding, then it is a concern. So you know, it's kind of linking it all together. But your physiotherapist they may have had children themselves, they may have bottle fed, they may have breastfed, so it's a little bit of a luck of the draw as to who you saw. And I know when I saw children with torticollis, the majority of our assessment would probably be around feeding. And I would be supporting feeding and things. Whereas I know my colleagues probably would ask the question, Are you breastfeeding or bottle feeding? And that would be it. So it's really hard to get the right person at the right time. And so yeah, I agree if if peer supporters or other lactation supporters are able to get some of these skills and knowledge then fab because it is a really common condition that can, you know, really affect breastfeeding relationships. And unfortunately, most of the infants that I see in the torticollis clinic would have already stopped breastfeeding by the point that I see them even if caught early, because their their problems were just their symptoms. Were just too too great to carry on.

Emma Pickett  1:12:51

Yeah, okay, that's sad. But I'm glad that wasn't your experience Alessia and that you were still going strong at 13 months and look at Luca is very lucky that you are someone who didn't take no for an answer and kept pushing and listening to your instincts. And thank you very much for inspiring people with your story today. Thank you very much to both of you. And we'll put some inference show notes if we can find them. And I'll ask Nicola for those accounts and the physiotherapy accounts on Instagram, we'll put those in the show notes as well. Yeah, and if this is your experience, and you suddenly had a bit of an epiphany today thinking, Oh, my son may be or my daughter is struggling with this. As Nicola said, it's never too late. Get some contact with a physiotherapist may so the first port of call would be a GP would you say Nicola?

Nicola Walker  1:13:37

GP or health visitor usually or if you're if your local service accepts referrals from the parent, some some services do you just have to find out about your local service. But yeah, contact your health visitor or contact your GP and just say I'm a bit worried about my child's head turning preference, and that should kick them into action to do a referral. And that referral is normally prioritized quite highly by the physio services because we know it, the sooner we can see the child, the sooner it resolves.

Emma Pickett  1:14:04

Yeah, brilliant. Thank you very much today both of you really appreciate it. 

Emma Pickett  1:14:13

Thank you for joining me today. You can find me on Instagram at Emma Pickett IBCLC and on Twitter @MakesMilk. It would be lovely if you subscribed because that helps other people to know I exist. And leaving a review would be great as well. Get in touch if you would like to join me to share your feeding or weaning journey, or if you have any ideas for topics to include in the podcast. This podcast is produced by the lovely Emily Crosby Media.