Advocating Together: Uniting Disciplines for Cleft and Craniofacial Care
Brianna Miluk: Hello, hello, and welcome to The Feeding Pod. This is your host, I'm Bri, Brianna Miluk, and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see an outpatient or via tele practice.
I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence-based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences, specifically as it pertains to social media and translational research.
This podcast is meant to share anything and everything related to being a pediatric feeding SLP, feeding therapist, with sprinkling in a little bit about working in academia, being a PhD student, and how to access, appraise, and implement research into clinical practice.
Some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind. Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research. So, without further ado, let's get into today's episode.
Welcome back to the feeding pod. I'm so excited because I have Meg Lico here today and she's amazing. If you don't already know, she's probably, you've probably seen her on my page here and there, and she's one of the mentors in the advanced group.
And she specifically specializes in the, the cleft and craniofacial population. So that is her clinical focus and where her expertise comes from. So. That's what we're going to be talking about today, but we're going to be doing it through a little bit of a different lens. We're not just going to be talking about like feeding with cleft and craniofacial diagnoses and patients, but we're going to be talking about like the members of the team.
How can you, how can you establish yourself and advocate for like the feeding therapist role on these teams? And then also we're going to, of course, do some myth debunking because would it be a podcast with Bri without doing that. But Before we start, Meg, I'm going to pass it over to you, and why don't you kind of just give everyone a little bit more on your background, what you do, and where you're at right now clinically.
Meg Lico: Yeah, thanks Bri for having me love coming on your podcast, always so fun interacting, we're, we're always making jokes about myths and things like that, so that'll be really fun. I am Meg Lico, I am the speech language pathologist on the NYU cleft and craniofacial team in New York City and I got my graduate degree at Columbia University here in New York, and then I did my clinical fellowship at Children's Hospital of Richmond at their satellite campus in Fredericksburg.
That was not just cleft specifically. It gave me a whole range of different diagnoses and populations, which was great. And then I came up to this role and I've been here for just about three years. It's been wonderful. And, you know, I'm in the ACPA that's the American Cleft Palate and Craniofacial Association.
So, I'm, I'm a member in that organization. I'm a mentor on Bri's Advanced Pediatric Feeding Mentorship Group, which has just been such a lovely group and it's been a pleasure working with them. And I'm excited to talk more today about cleft and craniofacial, all things cleft and craniofacial. I'm not just-
Brianna Miluk: Yeah, I'm really excited about it. And yeah, I like total side note, and of course we, we have bias to it, but like the group is just so fun. And honestly, the cohort we have right now has been amazing. So if you're currently in the fall cohort of 2023, y'all rock. They're just so interactive and everybody's been asking such awesome questions and like really critical conversations happening.
So it's been really fun, but all right, let's dive into, sorry, my dog just excused herself out the door. So let's dive into what we're going to talk about. So one of the first kind of topics is talking about like advocacy and collaboration for ourselves when we're working with a team. So why don't we kind of start out with like, just define like the care team in general.
So when working with cleft and cranial facial patients, what would you, who would you say are like the primary members of the team? Of course, this will vary child to child, but kind of the, the primary members of the team and like a little bit about their role. And then let's get into like, how can we collaborate together?
Meg Lico: Yeah, absolutely. So one of the things I love the most about being specialized in this particular population is that it is very interdisciplinary. So to be an ACPA approved care team in the United States, you have to have a surgeon on your team an orthodontist on your team and a speech language pathologist.
However, the majority of great teams that I meet with every year during our annual meeting have way more disciplines than that. And I actually think it's incredible how many we have. So on our team specifically, to give an example, we have our surgeons who obviously are doing the primary palate repairs, lip repairs, et cetera.
We have our orthodontist. We have our wonderful nurse practitioners. We have our amazing dietitian, Debra, who is here part time. Myself. And also we have like a number of wonderful support staff in terms of administration and we also have in terms of psychosocial a social worker and a psychologist.
So we have a whole plethora of disciplines and then we work very closely with our ENT department. Sometimes the cleft teams are actually ENT surgeons themselves. So it just depends on how the team near you is structured. And then we also work very closely with genetics, neuropsychology, GI, of course, for feeding and a whole number of different things- neuro if the child has something like craniosynostosis.
So really it's a super broad range, but it's really important to collaborate with everyone. And every team kind of has a different setup, which is interesting. So I'm used to the setup on my team, but it's interesting because when I go to the ACPA, sometimes someone else is the point person for feeding.
Sometimes it's a collaboration like ours, where we kind of pick our roles depending on what the case informs us. So if the child, for us, tends to have more of like an oral motor difficulty with feeding. Maybe they need some bottle adaptations. Maybe that they were in the NICU at our hospital and they were getting swallow studies and we, we weren't sure what, quite what was going on.
Those are the things I try to tackle. If it's more of a weight gain issue, calorie, formula, allergy, et cetera, our dietician tends to take that on. And our, our NP kind of supports the whole child. So they do the weight measurements. They're communicating with the surgeon as we, as we are as well, but the NP really is preparing them for surgery.
And so we all have a really important role and I'm very blessed that the people that I work with we all know kind of our scope. I know what I'm strong at. I know what I'm not strong at. And we all respect each other and it, it takes time to get there with any place, but I'm very, very lucky here. So the short, the long answer is that it depends on where you live. And that's the structure of the team, but that's just to give you a glimpse into my team.
Brianna Miluk: Yeah, no, that's super helpful. And of course, like you're speaking from your individual experience. It's not going to represent every single team under the sun, but I think it's still helpful. So one thing, and I'm sure that you've had conversations between other teams and stuff on this obviously sounds like you have an awesome, awesome team, but I think something that people can take away from just like team-based approaches, especially when it's a more medical based diagnosis is thinking about like territorial type stuff. So like people kind of having these like territorial sentiments over like what they get to do and hold on to and is like their role. And I know you kind of briefly mentioned like kind of being aware of your own strengths and your own limitations, I think is like step one to it.
But I would love for you to just kind of reflect a little bit about that. And like, like, this is a hard to navigate thing. There's not going to be a perfect situation or like a perfect answer to it. But based on your experiences and conversations that you've had with other teams as well. How do you feel like people can go about kind of navigating that and opening up the, up the door for collaboration?
Meg Lico: Yeah, 1000%. It can be very difficult. And I actually think I'm lucky now because I do have such a great working relationship with my team. But I can only imagine what it's like to even being a community-based therapist who's doing home health. Or if you're in a private clinic doing feeding and seeing one of these kids trying to then communicate and advocate as a therapist to that team is also difficult. So looking at the different levels of the community and everything. But in terms of communicating and advocating, so, you know, there have definitely been times I'm not even just in this position, but in, in, you know, throughout my career where you have to kind of show that you respect the other provider, but then you also something you need to offer. And so I think the way to do that is like you said to admit the things that you do and don't know and say, here's where I can add benefit. Here's where I can add my specialization. So, for example, being able to interpret a VFSS report was something that I felt like I could offer when I came on and it didn't mean that the person that was the surgeon, the rotating resident in the NICU didn't have a really important knowledge, but it just meant like, Hey, here's my thoughts. What do you think about this? And I think the other thing that has been successful for me, aside from knowing my own strengths and weaknesses, because I definitely have weaknesses as well, is just the way that you communicate these messages.
So coming from a place of how can we make this care better as opposed to, you're right, I'm wrong, or you have seniority and I've been doing it this way for a very long time. Because that's where it starts to run into issues and conflict. And I have seen times where I'm not with my team, thank goodness, but other positions where someone has come in guns blazing, like I, you are absolutely wrong.
And I know exactly what we should do in the care for this very medically complex patient. Because many of my kids are very medically complex, especially those with the feeding concerns, and they come in guns blazing. And in fact, they might have even been right about their recommendation, but because they came in so aggressively it actually wasn't as valued and respected by the MDs or, or the nursing team, depending on whoever they were speaking with.
And so I think part of it is understanding the strengths and limitations, but then also like creating respect based relationships with other people, whether it be on the team or whether you're a community based provider, you have a lot to offer, but it's the way that you communicate and the way that you kind of establish that respect provider to provider is what's important.
Brianna Miluk: Yeah, I really like that because I think it's, you know, sometimes in this situation, you're sitting there, like, biting the inside of your cheek, like, I really think this is the way we should go, but establishing that sort of respect first and then adding to, so it's kind of not like instead of this, let's do this.
It's okay. Thank you for that. And I can add. So it's not like an either or it's like, yes and. So kind of, I've heard that wording before where people are like, you know, when you're adding to a conversation to like strengthen respect and mutual respect is make it a yes, and. So, yes, that's true what you said.
And like, you know, based on your experience and your training and your knowledge. Yes. And this could also be true, like almost having like two truths to a situation, I think can just like build on it. So, I really like that.
Meg Lico: Absolutely. Yeah, and I also think I've, I've kind of phrased it too as like, what are your thoughts on this? Because sometimes we're actually thinking about different goals. So, one thing that I've, and I think we're gonna, we were planning on talking about this later, but just to jump into physician discussion. So, I work with many surgeons on my team and You know, in the beginning, I'm like, why aren't they seeing things the way I'm seeing things?
And then I realized, like, their goals for the child are very different. So the surgeon, I have a great relationship now, and they understand that I'm looking at functional eating goals, feeding goals, or even the speech and VPI, same thing. And they're looking at, is the child ready for surgery? So for example you know, I might want to give this long-winded explanation about what feeding therapy techniques we're doing and yada, yada, yada.
And the surgeon is like, okay, but are they going to be ready for surgery for palate repair in two months? Yes or no. Like, do we need to get them a G tube? Yes or no. You know? So understanding their perspective, because they have to accomplish their job and their responsibilities are not my responsibilities.
And that's a blessing and a curse. So that communication piece where you're like, yes. I am looking and thinking about that. And here's what else I'm doing. And here's what I'm thinking, getting their perspective. So what are your thoughts on maybe referring them out to XYZ? Do we have time for that? You know, is this something that's worth doing?
And kind of basically bouncing ideas off of each other so I like the way you phrased it, and then I also tend to ask questions, and then I sometimes even will change my response, because I'm like, oh, they're actually really worried about the neuro here, so I'm not really focused on this, this goal right now, because they're about to get a huge cranial vault surgery in two months.
Brianna Miluk: Yeah, I think that's really helpful. And it kind of does go into this next thing that we were going to talk about, which was building rapport with physicians. And I think specifically with physicians, because there is a lot of difference in terms of their priorities, their concerns, their patient care management, like schedules and timing and how all of that works.
So what other things could you add to say, like, to help build that rapport? So we kind of talked about, like, asking questions so that you can understand, like, their viewpoint and where they're coming from in the approach to it, but what else could we do to kind of build more of that, again, like, respect-based relationship?
Meg Lico: Yeah, I think- And this is not all doctors, but I do think that doctors are so used to being amongst other doctors and they go through med school. And so to be on an interdisciplinary team of speech pathologists, and I'm sure those of you in like acute care and other settings can also relate to this.
They don't always understand the value of our role and what we can bring. And I found one of the best things that I did right off the bat. I gave an in service to the entire team. It was more about speech and VPI, but then. Since then I've been doing some more feeding stuff and I found that I basically had to earn their respect and say, Hey, I'm a provider too.
And I have things I can offer. I'm not going to overstep my boundaries and tell you what surgical decisions to make. And I have, we have clearly delineated roles here and I'm not trying to come in and step on your toes. But at the same time, here are all the things that I know, and here are all the things based on the recent research that I can add.
Since you've been a surgeon for however many years, and I actually maybe can contribute a little bit coming, you know, fresh out the gate with all of the latest research and evidence that's both in the CPCJ journal, which is the ACPA sponsored journal, as well as all of the speech language and hearing journals that, that most MDs are not, you know, perusing on a regular basis, right?
They're looking at a lot more of the medical journals. So, to be able to provide that and show your skill set without coming in like a know it all, like, actually, that's wrong. Or, actually, I think we should do it this way. There's a way to go about it and just to prove your knowledge and skill set without overstepping your boundaries.
So I felt like over time, actually, it took a while in terms of feeling fully respected and I was never disrespected or anything like that, but just more of like, Oh, this girl actually kind of knows what she's talking about sometimes. And, and now it's been so wonderful because I've had from day one, great relationships, my surgeons here, but now even in peripheral settings, I feel like the longer I'm here and the more I can show my expertise and what I can bring without overstepping what they believe to be their knowledge and their skillset. I feel like it's become a much easier and more like facilitative relationship where we can get things done for the patient and it's just such a better situation.
Brianna Miluk: That's awesome. It makes me think about I have this quote written down. I was literally like typing it and refining it because it was from feeding matters conference like two years ago, I think.
And Dr. Erin Ross did this presentation on evaluations and she had said, we often start evaluations in our own domain. I feel like that's exactly what you're talking about, where like, we have to approach it knowing that like everybody is approaching this situation from their domain, and in order to actually have interdisciplinary care, we can't only stop in our domain.
And that might always be our initial like process, but we have to like already start to, and I think part of advocating for like our role in situations like that, where you're saying like physicians were there, like they're in med school, they're surrounded by physicians constantly. And then we show up, it's like, we might have to advocate a little bit harder, but if we start by saying, okay, let me approach this from a different domain, it can like start to build that and look at it from more of that team-based approach.
Meg Lico: Yeah. And even from like, just to give an idea of what our Mondays look like, you know, we see a ton of patients in the morning and then we actually sit in a conference room and we round on the patients all together, each discipline. And we each go around and say, what are our priorities are for that child?
What is the situation with their surgery schedule feeding you know, aesthetic outcomes for like lip repairs and things like that? Psychosocial. I mean, we go through literally everything. And sometimes it's like a really constructive discussion because they're like, well, I don't want to do that. I don't want to do VPI surgery right now.
Or You know I want to do something else. We, you know, the child needs a jaw surgery, so we do that first. And I'm like, okay, but this might help with the feeding or this might help with the speech. And, and we're doing this like really, it's, it's almost like a dance. It's like a choreo. It's really cool.
And that's what I love about my job specifically and why I'm in this role that I'm in, but it just makes me think of that where you, you really are each domain has a seat at the table and that requires respect from the surgeons and MDs and other providers as well. But it also comes from you respecting their knowledge and all of the time and work they put into their position as well.
And that choreographed dance with these cases can actually be really beautiful and. And you leave that conference feeling so like, yes, okay, we figured this out for this patient. And it feels so nice. So I completely agree. I think it's that domain piece and, and then it's an intertwined dance that requires a lot of like nuance you know, nuanced conversation, I guess.
Brianna Miluk: Yeah. I love that. But I think that's like, yeah, like that's definitely a dream is to be able to like sit in the room with all the providers and talk. But regardless, all of these are just great tips to take away, even if you're not in that type of setting, like being someone who is in more of the home health and the outpatient setting, I think it's still just helpful for understanding, like, how to approach the conversation, how to even just approach my way of thinking as well.
Like, you know, if I have a little one who, you know, is awaiting a cleft surgery, or, you know, maybe they are awaiting a cardiac surgery, or, you know, something neuro going on, or whatever, to always think, like, okay, we have to think about it from everyone's domain, not just my own. And sometimes we don't always get to have those, like, direct conversations with the provider for a little while, but we can at least be, like, trying to think through the lens of that domain, so that we might know, okay, how this is affecting, like, our plan of care.
Meg Lico: A hundred percent. And I think to go off that, if you're a community based therapist and you do have a child with cleft or craniofacial condition on your caseload, one thing you could do instead of feeling like, oh my god, now I got to talk to these MDs and they're not, and they don't even know who I, my name and you know, there usually is a speech pathologist on the team in some capacity.
And so I really listened to the therapists that are working with my kids in the home, because I often do not see my patients very frequently. Especially for feeding when it's mostly a home-based thing. If the child's under one year of age, et cetera, et cetera. And so. I am relying on your input and your value.
So it might be in terms of like tips and tricks, it might be beneficial for you to figure out who is the point person for speech and feeding on the team and then collaborate with them. And our dietician does the same. She talks to speech therapists all the time. We will collaborate and then I can advocate knowing being on a first name basis and saying like, Hey, the community-based therapist really feels like this. And I kind of agree. And that might be another way to ease into it a little bit.
Brianna Miluk: I like that too, because as part of the craniofacial team you do already have the lens of what everyone else on the team is thinking. So instead of like us having the point of contact being like, Oh, we need to talk to all of these providers.
It's like, wait, who is our primary point of contact on the team? Who knows what's going on with the whole team? So then it also kind of lessens our load of not having to call every single provider, but more so having just that point of contact to the whole thing.
Meg Lico: Yeah, because we speak the same language, like, you know.
Brianna Miluk: Yeah, we can actually decipher what we're trying to say.
Meg Lico: Exactly, exactly.
Brianna Miluk: Yeah, I love that, I love that. Okay, so, moving kind of to the next thing, so thinking about working with patients with craniofacial diagnoses. So before we get into kind of debunking some of the myths and things, you know with with craniofacial diagnoses like talking about evaluations and treatment and we've kind of talked about like, you know, you really have to make a team-based approach, but do you have any recommendations for people that are wanting to learn more about this?
I feel like this is an area where you kind of want to learn more again from the other domain perspective as well. So don't limit yourself to only learning about it from your domain, but I would love to hear some of your thoughts on it. And I know you talk very highly about like the ASCPA. Did I say it right? Or did I reverse it?
Meg Lico: ACPA. ACPA, yup. Some people get confused with the ASPCA, which is like the Society for Prevention of Cruelty to Animals.
Brianna Miluk: Yes, I don't know. I was throwing the S in there. That's exactly what I did.
Meg Lico: I support both. I support both, but yeah. ACPA. ACPA. The American Cleft Palate and Cranial Facial Association.
Brianna Miluk: Yes. Okay. So I know that you obviously recommend a lot of the content, the journals, the conferences that they put out, but I'd love to know if there's anything else you think in particular people should consider.
Meg Lico: Yeah, absolutely. I think the number one thing you can do to set yourself up for success is get as many and I know this is easier said than done, but as many medical records as you can from that patient, because a lot of our kids have had many different surgeries.
They've had many different surgical outcomes; they might have a multifactorial team meaning like they might have cardiac. They might have like a cardiac surgery and they saw a feeding therapist at that time with that team and then maybe they came for their cleft palate surgery with me and I wrote a note and they might have seen our dietitian throughout those years.
And so the more you can get a full picture, the better. So that's number 1. Unfortunately, there's not a lot of research for feeding because this is a fairly, it's one of the most common birth defects in the United States, which is interesting, but weirdly, there's not a ton of research on feeding specifically within this population.
And so I feel like it's one of those things where you have to apply your clinical expertise and your clinical knowledge like you would with any child you see on your caseload and then match it with the limited amount of literature and evidence that is there, and the evidence that is there is pretty cut and dry, which is good.
Certainly there are things where teams don't agree, and there's always a consensus, a lack of consensus on certain things, like, for example, post-operative protocols after palate repair, something that, is still up in the air. We talk about it every conference, but there are certain things like bottle adaptations that are widely understood and widely accepted by the research and by the literature.
So I think looking at what the literature does support and then applying your clinical expertise to it. And then the other thing is a lot of our children who have an additional genetic diagnosis, have a number of other things that could impact their feeding, not just the cleft lip and palate. So a lot of times I'll get, Oh, well they had a cleft palate.
So once the cleft palate's repaired, like everything's going to be fixed. And it's like, actually, no, that's not how it works. And so we have to continue to use like our critical thinking match with the medical record information that you're seeing from their MRN. And their, you know, their chart review and then go from there.
So I think it's, yeah, it's like a seesaw a little bit of like SLP clinical knowledge and expertise, like with typical feeding norms match with the kind of specialization piece.
Brianna Miluk: Yeah. Very cool. Very cool. Yeah. And I think that's where, like, I feel like what that's with a lot of feeding in general is like, we can't just learn how to approach it from a sensory motor standpoint. Like there's so many other aspects involved that like learning from these other disciplines and like taking into consideration, like. More holistic views of what's going on can help a lot, a lot.
Meg Lico: I have a fun example if you're interested.
Brianna Miluk: Oh, yes, give us a case example.
Meg Lico: So if you guys are familiar with Robin's sequence, Robin's sequence is a plethora of symptoms that kind of co-occur. One being a cleft palate usually a, like, U shaped type cleft palate, no lip. Airway difficulties because of the micrognathia, so their lower jaw is set backwards um or is smaller or so you could say retrognathia or micrognathia - retrognathia set backwards, micrognathia smaller. And they have, you know, a plethora of other things, usually essentially a larger tongue or a tongue that's set further back. So anyways. We had a child who was under care of our team and they had gotten what was called a mandibular distraction, which was when we actually moved the lower jaw forward in surgery at a very young age because it's difficult for them to breathe. And so we finally got them at-
Brianna Miluk: I feel like I want to emphasize, like for people that aren't familiar with it, like it can be so set. Like so far setback that these kids need trachs, like full occlusion of airway, like it's not just a retracted jaw, like it is-
Meg Lico: Correct.
Brianna Miluk: Very significant to the point of like, could be very little airway space at all.
Meg Lico: Like their AHI, like if they ever get sleep studies, is so high, it's like off the charts, and we'll do that surgery literally to avoid needing to have a trach placed. So I'm not just talking about like-
Brianna Miluk: Yeah, yeah. That's what I'm saying. Like, this is like a major, major surgery because it's so significant.
Meg Lico: And they have like diagnosed Robin sequence, like evaluated.
Brianna Miluk: Right.
Meg Lico: So we had a community speech pathologist who was working with the family in the home after they got through their mandibular distraction, distraction surgery, and they were preparing for their palate repair at a year of age, and the therapist actually recommended a tongue tie revision. And what can happen is, like, if you're just looking at the speech lens and you think, oh, I'm just making a recommendation based on, you know whatever, we'll leave that up to your interpretation, based on whatever you thought.
If we had cut that tongue frenulum, that could actually fall back in their airway and cause major breathing issues. And so it's really important to think about airway. It's really important to think about cardiac, all these other reasons why this child might be having a hard time with eating. And then our recommendations, if we're not careful enough, can actually make it worse for that child without realizing it if we're just looking at these hot topic speech things that come up on Instagram.
Brianna Miluk: And it very well could be that the child does have a super restricted tongue, right? Like they could have that but do they have that because their body put it there? To not occlude their airway more like it very well could be that like the body was like yeah no, we're gonna we're gonna leave the tongue up here and we're gonna leave a little bit tied because sometimes like the opposite will happen if somebody doesn't have a tongue far enough forward and sometimes it happens in those cases. Where like they actually will tie the tongue further-
Meg Lico: Yeah, there's something called a tongue lip adhesion, which is, other teams use that if they don't do distraction, we, our team tends to do mandibular distraction, but there is, especially like in other countries, they'll literally, literally, basically create a tongue tie to the lip, to keep it from falling back in the airway, which is wild and so you're absolutely right.
And, and even, let's say, even if the child was severe tongue tied that you have ever seen as a speech pathologist or something like. I don't know. That still might be contraindicated for that patient because these patients have a multifactorial, you know, complex diagnosis. So we just have to be really careful when we're giving our recommendations and making sure that we take into account, like you said, every discipline and every concern that that child has. Airway being one of the main ones for my kids, I think. I think I would stress what is the airway situation with if you have a child on your caseload with a craniofacial condition of any kind.
Brianna Miluk: Yeah, and I think, too, it just comes into, like, prioritization of things as well, like, okay, maybe that's something that, you know, if it did need to be released down the line, you could, but, like, priority right now is, like, is open airway, is healing, you know, going on with that, figuring out if they're going-
Meg Lico: Preparing for the palate surgery.
Brianna Miluk: Are they going to, yeah, like, there's another surgery coming up, like, do we really want to put them through anything extra at this point in time, so, thinking about it from, again, all the- All those lenses. Totally.
Meg Lico: Yeah. So that was a tough situation for me.
Brianna Miluk: Yeah. Well, and I'm sure it's tough too, because that's also a situation where you're going to have a difficult conversation where I think sometimes providers in the community, and I'm speaking as one, you know, where we're like, I just feel like the other team doesn't understand what we're doing.
And it's like, well, maybe they just have a different priority and a different lens and we have to consider that one. So it's not that one person is like right or wrong in every situation, but it's also important that we consider like, okay, well, what's their lens? Because we have that conversation they're like, yeah, no, I don't think we should do this because like, we need to maintain a patent airway because they're also going to be having cleft surgery soon. It's like, okay, there's other things I can do in, in the interim, you know, and paying attention to that. So.
Meg Lico: 100%. 100%.
Brianna Miluk: Good story. Good story. Okay, let's get into some of these myths. So, I wrote five for us to go through, but I feel like there's so many. Also, just so all y'all know when we're listening, we came up with this idea before ASHA put out a Debunking Myths article, and Meg was like, wait, I haven't even seen this article yet, when I told her.
Meg Lico: Yeah it was like perfect.
Brianna Miluk: It was literally perfect.
Meg Lico: Because it was everything we talked about.
Brianna Miluk: Yeah. So I'm gonna put the-
Meg Lico: There were like ACPA people that I love. Yeah.
Brianna Miluk: Yeah. I'm gonna put the article in the show notes so that you all can follow up with more. And there's other myths that are listed there that we're not gonna talk about today. So definitely check it out. But first and foremost, I'm gonna go backwards in the order that we have listed here, Meg cause I think the number one, one is the most like cringe myth.
Meg Lico: Yeah.
Brianna Miluk: Okay. So first, a child born with a cleft palate cannot expect to have typical speech.
Meg Lico: Yeah, that is a myth, boop, myth busted.
Brianna Miluk: We need to get a audio, like, sound effect.
Meg Lico: There certainly are times where a child might need additional surgical or therapeutic intervention for their speech. However, most kids with a cleft at least half the research really indicates 50 to 70% of kids who have a cleft palate and need speech at some point in their lifetime, but it does not mean forever.
And with the right surgeries, they can have typical speech and most of my kids by the time that they come back and are no longer kids and they're actually young adults. They do have typical speech with the right services. So the important thing is getting them set up with any necessary speech services, early and often.
And then there's actually research that supports that. If you start early with our kids, a lot of them can go on to graduate from all speech services by age five. I'm blanking on the name of the article, but I'll try and find it. So you can put it in the notes as well. And so that is a really exciting development that's come up in the last few years.
Kids with clefts can have typical speech. Just because they were born with a cleft palate does not mean that when you get them on your caseload, you're like, oh you know, basically they're a lost cause, so I can't do anything. You can help them advance their speech with the right therapies. They can have typical speech.
Brianna Miluk: Yeah. Love that. I love that. Yeah. When you find that article, let me send it in there and I'll make sure it's in the notes. Okay. Next myth. Child born with a cleft lip requires strengthening exercises to help feed because of their affected lip.
Meg Lico: Okay. giant, giant myth. I hear this all the time where I get called and I go, I'm working with a child's like, what exercises do you recommend for the lip? And I'm like, what? Sometimes the lip can be a little bit like tighter, firmer, anything like that does not have anything to do with strength. We also know that feeding does not require significant strength. And as long as the child can occlude their lips, which at my center, I have not met one child with just a cleft lip who has had that issue.
The only time has been with a craniofacial condition where they have like an anterior open bite or some kind of other thing preventing them from closing their lip, which again is not from the cleft lip itself. It's from a separate issue. So if the child just has a cleft lip. They do not need to strengthen their upper lip.
They can close their lip and approximate for things like stripping from a spoon and anterior and containment and things like that. And if they don't, there's probably an underlying or coordination issue going on that you would treat with any other child that you saw who didn't have a cleft condition where you just need to work on that coordination of them stripping from the spoon or things like that. They do not need strength-based exercises for speech or for feeding.
Brianna Miluk: Yeah, I love that. Yeah, it's, I think we have to, like, remember in situations like that, like, anatomy versus physiology, and, like, anatomical part, pre repair, sure, there might be some limitations, but post repair, we should have the anatomy to be able to do it, and so, like, building the strength isn't going to help, we just need to practice the actual task, like, being specific.
Meg Lico: Yes, task specific is so important.
Brianna Miluk: Yes, okay. Number, myth number three, you kind of slowly mentioned it, but a child with a medically complex diagnosis will improve their feeding difficulties as soon as the cleft palate is repaired.
Meg Lico: Yes, I, this is probably my hardest one to deal with because I usually hear this from other disciplines. And I have literally been told before, luckily not at my hospital, but in other positions and other settings that, Oh, well the child might be in the NICU and they'll say, Oh, well, you know, we're just waiting on you guys to repair the cleft palate. Cause the child's not feeding. So we placed a G tube, but then like, it should be fine.
Right. And I'm like ahh because most children who have a cleft palate can feed well with the right bottle and you know, quick fix type adaptation. So again you guys will hear about a lot of this in the APFMG group. If you take that I go through all of the well-known facts in the literature and easy, easy ways that you can help families with feeding for cleft.
We go through posture, bottle types, nipple types, et cetera. And so if you can employ all of those, and in fact, our center actually works with the parents prenatally to talk through these things so that by the time that they're in the hospital and the labor, labor and delivery unit, they are equipped and they feel empowered to be able to feed, whether it be with breast milk, with formula, whatever we've spoken about through the necessary adaptations. Those kids for the most part can then feed very well. If they are not, that usually means that their other medical complexities are contributing. And for that one child in the NICU, they have like agenesis of the corpus callosum. They had dandy walker variant. They had so many other things going on. And so I, it took a while to explain, like actually just because we're repairing the cleft palate doesn't mean that the child's not going to need feeding therapy or the child's not going to need additional supports. And that was an uncomfortable situation. And again, like we talked about earlier, it was a lot of approaching it in a respectful manner and just kind of pointing them to the most recent literature without you know, going crazy with it. The only thing I'll tell parents when their cleft palate is repaired is that they'll probably see less nasal regurgitation over time, meaning that stuff that's coming out through the nose because we are physically closing that hole where the purees and formula or whatever can be can travel up through it.
That would be like the one thing where you might see a little bit of an improvement. But even then I have kids who've had genetic diagnoses who still have nasal regurgitation because of a coordination issue with closing the velum. So even then, I can't even guarantee that.
Brianna Miluk: No, that's great because I think it is like, okay, so if we, you know, are trialing all the things that are like, you know, surefire, like this should work, change the bottle system, maybe a few positioning or pacing or whatever changes.
If that's still not working, we still, we can't just say, Oh, we'll just wait on the surgery because like, odds are something else is there. And so we have to investigate further. Love that.
Meg Lico: 100%.
Brianna Miluk: Okay. Myth number two, children with a cleft lip or palate are more likely to be picky eaters than other children.
Meg Lico: I don't even know. I've never even heard that myth before. I don't know where that came up from, but like, no, I'm just going to, I'm not even going to explain that one. False.
Brianna Miluk: Just false.
Meg Lico: Just wrong.
Brianna Miluk: Yeah, it is completely just wrong. And again, I think it's like remembering that yes, there could be other associated diagnoses with it, but like a cleft lip and or palate is anatomical. So like, we just are thinking from an anatomical lens and how that could affect physiology.
Meg Lico: Yes.
Brianna Miluk: But like, that doesn't necessarily mean a child is going to be pickier because of that. I feel like picky eating is blamed on like a hundred things, and so I think that's where that like myth comes up.
Meg Lico: Yeah. I think anything, they just like to throw it in the cleft lip and palate basket. They're like, oh, well, you have to handle it because like the child on a cleft, and it's like, well, actually like, that's not how it works. Because not everything is caused by the cleft lip and palate, especially the cleft lip. They're three months of age. They haven't even really started solids or anything. So what, what do you think? Are there any other lip repair? Do you know?
Brianna Miluk: All right, last myth. So blowing and sucking exercises, strengthen the velopharynx or strengthen the, you know, lips or oral motor, oral motor- what am I thinking of like musculature and well accepted treatments for hypernasality.
Meg Lico: Yeah, this is another one. So the other big part of my job aside from speech and feeding is resonance and velopharyngeal dysfunction. We're actually my surgeon and I are actually going to be at ASHA this year. If you guys are listening and you're going to ASHA. We're doing a talk, one-hour oral seminar on actually very similar to what we talked about in the beginning, which is how do you communicate and what are the perspectives from each provider?
And so we'll have a couple of case studies and we'll talk through what my surgeon, Dr. Flores, what his perspective is and what he's looking at and then how I can contribute what I'm looking at when making these hypernasality type decisions. Blowing and sucking exercises like straws and horns do not strengthen the velopharynx. We just talked about task specificity. That is not a task specific issue. If you want the child to blow a horn, I guess you could, I don't know, but for hypernasality specifically, if it's true hypernasality, it's actually not going to be fixed with speech therapy period.
You need to get a full research resonance evaluation with a ACPA approved cleft team to make a decision on if the child needs surgery. There are times where things sound like hypernasality and they're actually compensatory errors that we can work on as speech pathologist, but those issues such as a nasal fricative issue or what we also call velopharyngeal mislearning that is not a strength-based issue. That is actually a coordination and placement issue which can be fixed with speech therapy within the context of actual speech production. So, blowing and sucking is a no go.
Brianna Miluk: Yeah, and that's a no go just across the board. Like, with hypernasality, when you're trying to, like, reduce nasal regurgitation, all of that, it's like, no.
Meg Lico: There's actually a great parent handout that came out and it literally is like a one-page handout that was published. I think it was published in a journal. I'll add that one to the list also. And that one- It's, it's really easy digestible for parents because parents a lot of times are reading this on social media. So if you're a community-based therapist and you're like, Oh, like I, I, I don't want to, you know, be the Debbie downer for the parents. Like you can give them this form and let them read it and then answer questions for them. So I really like that as well.
Brianna Miluk: Yeah, I know exactly which one you're talking about. It's basic, it's like very straightforward of like why NSOMEs are like not effective and-
Meg Lico: Exactly.
Brianna Miluk: Why we're not supposed to be doing them. So yeah, we'll definitely link that one in there too. So, okay, before we close out today, I have two rapid fire questions for you. So I give two random questions, just answer them in like a word or two or a short sentence. They're not difficult, but first one is I would like to know, like, what's your favorite type of music? What do you typically listen to on a day to day?
Meg Lico: Ugh, in one or two words? I'm all over the place.
Brianna Miluk: I mean, you can be a couple if you have to.
Meg Lico: Okay, alright. We got Taylor Swift poppy vibes, and then we've also got this kind of like, like, Noah Kahan type, like.
Brianna Miluk: Yes!
Meg Lico: I'm very into acoustic. I'm learning how to play acoustic guitar, so I've been really into this kind of raw type, still kind of pop, but influences of rock, and, and, you know, that kind of thing. And then I love my 2000s throwback.
Brianna Miluk: Oh, yes. I love that. I, I love it. I'm a very much like all over the music, all over the place with music kind of person. My like go to's are definitely more of like a poppy vibe, but I also really like Broadway and musicals. Like,
Meg Lico: Oh, I, you know, I live in New York city. I'm not a huge Broadway fan.
Brianna Miluk: Oh my God.
Meg Lico: I should be though. You can come. You can come.
Brianna Miluk: Rip my heart out! Yeah. I'll just come and go to shows.
Meg Lico: It's not like I need like stripped versions of songs. Like I need to feel like a raw feeling. Like.
Brianna Miluk: Yeah. Oh, I, I love me some Broadway musicals and like just musical movies and stuff. But when I'm like working, I'm really into lo-fi covers. I don't know if you've ever listened to lo fi, but I am really into that when I'm like, if I'm like working or something and I just need background music, that's my like, work music, but.
Meg Lico: I love that.
Brianna Miluk: Yeah. Okay. Second question cause I know you're a Dunkin girly. What's your Dunkin order right now?
Meg Lico: Okay, so my classic Dunkin order is a small iced coffee with just one pump of caramel swirl, because they always put way too much caramel in there, so I ask them for less and almond milk, or if I'm feeling really crazy, oat milk. I've been experimenting with their Dunkin refreshers, which is super tasty, but sometimes you just need the coffee, so that, that's my go to order through and through.
Brianna Miluk: I love it. Are you a pumpkin person? Like, do you-
Meg Lico: I don't dislike pumpkin, but I do feel like it's overrated. You know, it's crazy. They have Starbucks recently came out with like pistachio in the fall flavor thing.
Brianna Miluk: That's really good.
Meg Lico: And then also apple crisp lattes and anything apple I've been into, which has been kind of weird. I didn't think I was going to like it. I tried it once. That was really good. So I do like Fall flavors, but I'm just not quite there with the pumpkin.
Brianna Miluk: I literally have pumpkin right now.
Meg Lico: Oh my god, I love pumpkin bread and pumpkin muffins, things like that, but there's something about it in my drink. I'd rather just do caramel. I don't know. I'm just a caramel girl.
Brianna Miluk: That's what you're going for. That's what you're going for. So funny. No, I'm a pumpkin. Like, the second it comes out, I'm like, perfect, wonderful. Put all the pumpkin.
Meg Lico: Oh my gosh. I did the apple crisp on the first day, the apple crisp oat latte or something. I'm from Starbucks. And then I'm hoping Dunkin's going to come out with it because I'm much more of a Dunkin fan. I like that. First of all, they're less expensive. Second of all, it's close to work. It's like walking distance. It's amazing. I grew up in new England and Dunkin, for those of you who are listening, Dunkin is like, so I, I loyalty there.
Brianna Miluk: I love it. I love it. All right. Well, thank you so much, Meg. This was so fun. And I feel like it was really helpful for not just people that are working on a team, but also those of us that. aren't directly on the team, but like, how can we communicate? How can we build better relationships? And then of course, myth busting is just always fun to bring up that information, because unfortunately it does take a while for things to get caught up and some outdated practices will hang around a little longer. And so. Try to spread that we should just not be doing those things anymore. So.
Meg Lico: Yeah, and listen, if you believe in all those myths, like now, you know, it's not a big deal. Don't, don't, you know, don't beat yourself up, we're all learning all the new literature is coming out. You know, I'm never perfect. I've definitely changed my practice over the last three years. Totally. Okay. We move forward. We move onward and upward with our evidence-based practice.
Brianna Miluk: Yes, exactly. That's the biggest thing. Constantly changing. Honestly, I hope that I learned something that I've been doing wrong every year. Like, I hope there's something that I'm like, oh, wait a minute. Let's rethink that. Because I'm 100% for continuing to learn. So, thank you so much for being part of the podcast today. I appreciate you and until next time.
Meg Lico: Yeah, hope to see you guys in the APFMG group or you can check out my Instagram @thecraniofacialslp and Bri, I'll see you very soon.
Brianna Miluk: Yeah! Excited. Bye.
Meg Lico: See you guys at ASHA. All right. Bye guys.
Brianna Miluk: Thanks for tuning in to The Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues and leave us a five-star review wherever you're listening from. If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bri, me, on Instagram @PediatricFeedingSLP. Or check out my website where you can get access to more courses and information www.pediatricfeedingslp.com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.