Close the Gap: Laryngeal Clefts
Tovah Feehan: [00:00:00] Welcome to The Feeding Pod. We are very excited to talk everything laryngeal clefts today. And I have two guests with me, Carolyn Schultz and Caetyn Groner. They come with us with a wealth of knowledge about laryngeal clefts, both from their personal experiences from advocacy work, and also with Caetyn being an SLP who serves on the board at the Laryngeal Cleft Network, and Carolyn founding the Laryngeal Cleft Network. We're going to get into all of that during this episode. So do you guys want to briefly introduce yourselves?
Caetyn Groner: Sure. As you said, I'm Caetyn Groner. I am a pediatric SLP out far in West Texas. And my son has a type one laryngeal cleft and he has some other diagnoses as well, one of them is FPIES. And so it made this whole thing very confusing getting all of his diagnoses straight and figure it out. And I serve on the medical advisory board for Laryngeal Cleft Network.
Tovah Feehan: And how [00:01:00] about you, Carolyn?
Carolyn Shultz: Thanks for having me, Tovah. I'm really excited to be here. I'm Carolyn Schultz. I'm the co founder of Laryngeal Cleft Network, along with Deb Bachman, who's another parent. My son was born 21 years ago in Montana with a type 3b laryngeal cleft, which was a real challenge. We ultimately ended up in Boston for his care, and he was able to have his cleft repaired endoscopically as a toddler.
However, when he was in his late teens, the top reopened, and so we had to go through it all again, he ended up having an open repair in 2023, and after that, we had to isolate in our home for about eight months. We chose to, to allow that repair to fully heal and during that time, I [00:02:00] realized that all of the challenges we have had when he was a baby.
Parents were still facing that with this diagnosis, and I was so amazed that there was no nonprofit that had been established to help this community. So, I talked to Deb Bachman about that, and we decided to start up Laryngeal Cleft Network, which we did last year in 2024. And we launched the website in October, so happy to be here.
Tovah Feehan: I'm happy you're here. And do you want to share a little bit? Because I know, Caetyn, you mentioned your son had a type 1 cleft. And then you mentioned, Carolyn, that your son had a type 3b. So for people who aren't familiar with even what a laryngeal cleft is, if we could just give them a little background.
Carolyn Shultz: Yeah so laryngeal cleft, everybody's familiar with a cleft lip. You can see it. It's a division in [00:03:00] tissue. A laryngeal cleft is a division in the tissue between the esophagus and the airway. So depending upon how deep it is, we grade it. There's four different types with type one being the most mild, and that's isolated still to the larynx as it goes deeper, a type three B has gone beyond the larynx into the trachea, and then a type four can go down the trachea, even into the bronchi.
Tovah Feehan: And it's tricky to diagnose.
Caetyn Groner: Yes. *Talking at the same time*
Carolyn Shultz: See it. And so you have to know it actually exists to be suspicious enough to order all the testing that's required is really tricky.
Tovah Feehan: One of the themes that I have found talking with, working with different families, and then just talking with different families in different parts of the country is a thread that [00:04:00] parents really had to advocate and push for more information. And feeling stuck and how tricky it was to get to the point of diagnosis seems to be like a common theme. Is that what, what you found too?
Caetyn Groner: Yes, at least in my son's journey specifically. I mean, I knew all the things to look for. I work with dysphagia in pediatric populations. I, I'm, I'm versed in all of it. My oldest child had laryngomalacia. So I knew the sounds of abnormal breathing. But it, from birth to, he had symptoms at birth and then we didn't get his diagnosis until 15 months old. And he'd been symptomatic the entire time. And that was such a challenge. And it's such a challenge to continue and be that advocate every step of the way when you feel like you're not being believed, or maybe you're seeing things or maybe things aren't as bad as you think [00:05:00] they are and looking through my journal and notes that I would prepare for our physicians before any, you know, pediatrician appointment or specialist appointments in preparation for this podcast, I'm like, wow, those were crazy symptoms. Those were so impactful of every day and what we lived through, it was crazy to revisit some of those, those symptoms and-
Tovah Feehan: What were some of those symptoms?
Caetyn Groner: Yes. So for my son, and I hear this a lot the coughing, choking, red eyes, poor feed tolerance. When my son was really young a few weeks old, we were still trying to nurse and his latch was beautiful, but he would just fall asleep immediately. He would suck, suck, suck, have this great latch, and then just go from awake, active feeding to asleep. And it's hard to explain that to people who aren't necessarily feeding experts, or who don't know a lot [00:06:00] about infant feeding. But that state change is a sign of distress. And it was hard to explain that, no, he's not just sleepy, I don't need to try again in 15 minutes.
He's, he's out, he's out cold from distress. So that was the early, early issues we had, but then a tracheal tug, neck retractions, rib retractions, perioral cyanosis, so blue around his face, the inspiratory strider that I heard with my older son, I heard very much in my youngest. So I was assuming a lot of laryngomalacia for him with the breathing signs. But then the coughing and the choking just got so much worse with time. I also noticed that after particularly bad choking events, either on his reflux or on his bottle, he would get a fever about 24 hours later.
Tovah Feehan: Wow.
Caetyn Groner: It was never bad enough to it get testing for viral things, but it, I mean, now we [00:07:00] know he was aspirating but those were some of the signs. I think the scariest ones that stuck out to me most and started to get people's attention were when he would stop breathing from choking on his reflux. So we went, even when he wasn't eating, this was happening. And that was really scary to deal with as a mom, because I don't have suction. I don't have tools to deal with that. I have tools to help them eat, but the breathing was a little bit different.
Tovah Feehan: And how about for you, Carolyn?
Carolyn Shultz: Yeah, so right away, my son could not feed. We noticed that in the hospital, the nurses noticed it, but you know, in those early days, you're just like, okay, they're getting some colostrum told to not worry about it. So I didn't. But when I took him home, I got really worried very [00:08:00] fast because he would swallow maybe twice, off, stop. That's it. Like he could not eat. We had just moved to a new community. And I took him right away to the pediatrician and said, my son can't eat. And, you know, I heard a lot in those early days of like, oh, there's immature swallows that babies grow out of.
So a lot of providers were really well intentioned and just trying to be reassuring you with that information. So I listened and, you know, took him back home, but the same thing was occurring and it wasn't getting any better. And I, it's kind of a blur, but within that first week I was at the pediatrician's office twice and the second time I went in, I said, [00:09:00] can I please feed him in front of you and show you what's happening? And unfortunately he declined that and he then said a little bit forcefully that I see no red flags here and I don't want you to bring him back for at least two weeks. So I got in the car, cried the whole way home because I was desperate.
Like my child could not eat. And luckily, I had a friend who was a SLP, I called her, she came over, she watched him attempt to eat and was very worried. And she said, you've got to thicken his feeds. So I immediately got formula, Avent bottles, box of baby cereal and a sharp knife. And you know, I had no guidance. This, this was in Montana-
Tovah Feehan: This was 20 years [00:10:00] ago, right?
Carolyn Shultz: 20 years ago, I like kind of joke about it. It was the wild west. There was no feeding therapy offered to me or that I even knew of. I don't know if it existed frankly back then, but we certainly didn't have it. And like every bottle I made, I was just like, all right, let's dump in the oatmeal and try and get it thick enough.
And I, I, you know, I got pretty good at it actually. And it was, I called it a sludge consistency, I think it would probably be pudding and I don't know about the more recent categorizations of what it would be called, because I have no experience with that, but he was at least able to eat that way.
And actually he developed really strong oral muscle through having to suck that sludge out and he could, I think this is sort of funny, he could whistle when he was 10 months old.
Caetyn Groner: It's really funny you mention that because I noticed my son could whistle yesterday and he's [00:11:00] 2.
Carolyn Shultz: Really?
Tovah Feehan: We need to do a research study on laryngeal clefts and whistling. Wow.
Carolyn Shultz: Yeah.
Tovah Feehan: So we have come, we have come a long way in, in some areas when it comes to intervention and IDDSI testing and swallow imaging and different bottle nipples that are available.
Carolyn Shultz: You know what? When that doctor told me don't come back for two weeks, I see no red flags. There was, this was in a small town. There was one other pediatric office and I immediately called them and went there and they immediately ordered a swallow study. Thank God.
Tovah Feehan: Wow.
Carolyn Shultz: So it did take us four months to get to a regional children's hospital where they were able to diagnose him. They diagnosed him with a type 2, which, you know, wasn't the whole, wasn't fully accurate, but at least they knew it was a laryngeal cleft.
And I do want to just say too, [00:12:00] you asked about the symptoms, like, obviously the feeding was a huge one, and he just outright didn't feed. Like, he wouldn't feed and have symptoms, he just didn't. But he also nearly died when he was two months old because he caught a virus and he had such severe respiratory distress suddenly and I rushed him to the ER and when I got there, his oxygen was 72 and they told me later, you know, they escorted me out and there was a big team around him trying to stabilize him and they told me later, had you been like 15 more minutes, I don't think we could have saved him. So that was really terrifying, and he wasn't diagnosed at that point.
Tovah Feehan: Wow.
Carolyn Shultz: Yeah.
Tovah Feehan: And for both of you, when it came to swallow imaging, and seeing, okay, there's an impairment here, there are adjustments that we need to make, I'm just curious [00:13:00] because I've also I heard from so many families where even once they get to the point and sometimes it's months where they get to the point and they finally get the swallow imaging and we see that there's a physiological impairment there.
We see aspiration. We see it up till whatever level, you know even then, it's hard to get to like, okay, well, now what? Like, we can start to thicken, but like, digging to like, why is this happening? And when you mentioned, Carolyn, even like, oh, it's an immature swallow that will grow out of it, I still see that even after a cleft has been identified.
Let's just wait and see, like, some kids grow out of it. And you and I have talked before about those windows of development, and we have these windows that babies are primed to learn certain things like chewing or cup drinking and different things like that, and so from a physician lens, they might be thinking like, oh, they might, you know, be stronger for the surgery, or they're thinking from a different perspective, whereas as as a speech pathologist, we can be the ones to advocate and say [00:14:00] like, hey, we need to do a risk benefit analysis here, because if we wait six months, like, there's a lot of feeding development that happens in those six months. So there was a question in there somewhere and I went off on a tangent.
Caetyn Groner: We're still experiencing that nowadays with parent, with providers, even surgeons, not just SLPs recommending wait and see. That was our first experience as our swallow study showed, he was aspirating, showed dysfunction, the SLP who completed it. We were like, there's no signs of neurological involvement. I mean, we're going through all the, all the options. What could this be? And she, she mentioned cleft. And so that's what helped-
Tovah Feehan: What?
Caetyn Groner: She mentioned a cleft. She mentioned, I mean, this, this is kind of the only thing left in my mind is something structurally wrong with, with his swallow. And so that's what helped us move forward. But even with that information, we were told to wait and see later [00:15:00] on. After scopes are our initial scopes. No cleft was found. No laryngomalacia, everything normal.
Tovah Feehan: You mean with your initial scope, sorry, with a flexible scope?
Caetyn Groner: No, with, we had a I'm hesitant to call it a triple scope because it was not a full blown aero team, it was just two, we had GI who came and did an endoscopy and then ENT came and did the rigid scopes. That ENT found nothing, even though we were directly looking for a cleft and then several months later, we went to an aerodigestive team for a second opinion. And yes, he has a type one cleft and laryngomalacia and tracheomalacia.
And surgery to fix those, the stitch repair. He had two stitches and a supraglottoplasty and he's doing great. But that our first recommendations are exactly what y'all have been talking about is the wait and see approach [00:16:00] and in children, at least in our case, in a family unit, that feeding dyad, I mean, we were, we were all struggling, he was very dehydrated.
His weight was poor. We were spending hours and hours every day feeding him. And it, that didn't serve him best and exactly what you were talking about in terms of development, not just feeding. So kids learn so much about sensory needs, about social experiences, all of that happens when they're eating and not only table foods, but bottle feeding.
That was something that we're going through now with my son is some sensory difficulties and reflex difficulties because we fed him in such a specific position and such a specific way to get him to be able to take just enough fluid to stay hydrated that he is now having sensory [00:17:00] struggles and not catching himself when he falls and other things like that because he wasn't able to move when he took a bottle. Yeah, it's, it's more than just feeding development.
Tovah Feehan: That's so true. I'm really glad that you mentioned that. And, and the other thing that, that I've tried to be aware of as a speech pathologist when I'm doing imaging, is getting really specific about what I'm seeing in that swallow. So, as an example, I did a recent swallow study, and this little girl has a diagnosed stage 1 laryngeal cleft that she was told they didn't want to repair at this time, and they wanted her to do a repeat study.
And so I made sure in my report that I said, her swallow is consistent with the other swallow studies that she had. Her oral skills have improved because we've been working in feeding therapy. Her swallow has stayed the same and the only impairment in her swallow is that laryngeal vestibular closure during the swallow.
[00:18:00] And it makes perfect sense that that is happening because of this stage one laryngeal cleft and getting so pointed and specific in that report so that mom is saying like, oh yeah, they called me and they're going to schedule surgery because otherwise the the ENT was thinking like, oh, and this is something that I've heard frequently as well.
It's not necessarily, they're not necessarily having swallow impairment because of the cleft. And that can be true when there are other comorbidities going on, that can definitely be true. But if we can get specific about what we're seeing in swallow imaging, then that will help the team with the family to make the decision about whether or not to repair and when.
Caetyn Groner: I think thats where one of the areas where families struggle is they don't know to ask for that. They don't know to ask for the swallow study, in some cases. And then once we get the swallow study, they don't know what to ask for, what to look for, to communicate that with the therapist who's completing the study. And to have, in your patient's very lucky [00:19:00] case the same therapist both times to where you can actually-
Tovah Feehan: It wasn't me first time.
Caetyn Groner: Oh, well darn. But at least you communicate!
Tovah Feehan: But I reviewed the first one.
Caetyn Groner: The communication piece I just feel like can be missing and we live in a smaller town and so a lot of times our patients travel first follow studies to different hospital systems. So when they were born, they were in this one major city, and then they come home and they go to this nearest Children's hospital. And then the third one is going to be local because they're tired of traveling. And so there's so much inconsistency in terms of the specific providers like skill with pediatrics. It's hard. Parents don't necessarily know to ask for that. And it's hard to explain that unless they have someone on their side telling them.
Tovah Feehan: That's why we need the laryngeal cleft network.
Caetyn Groner: Yes.
Tovah Feehan: What else can we do? Like how can we help in that early diagnosis phase? What for like a caregiver who's trying to [00:20:00] figure out what's going on and push for more answers or an SLP?
Caetyn Groner: I think for both it's communicate with each other. So I feel like oftentimes once there's some degree of feeding difficulty in an infant or child, a pediatrician is going to send you to feeding therapy and then hopefully order a swallow study and go from there.
So most everyone, I think, has a speech therapist. So communicating- parents communicating with your therapist, like this isn't working. We're not seeing progress or I'm not seeing progress. What are you seeing? Just really having that open dialogue, that open communication. Not, not being afraid to hurt your therapist' feelings or clinicians asking those hard questions.
Are y'all following through with these recommendations? Do you feel like you understand how to thicken the liquids? How is that going? Truly having open dialogue and not being afraid of it because the child can't advocate for themselves and the [00:21:00] doctors who you're who everyone's relying upon, don't know anything unless you give them this explicit, specific information.
Exactly what you were saying with here's the specific thing. I'm not seeing change and here are all the things that have changed- really laying that out. I think communication is key in every, every aspect, especially parents and especially therapists.
Carolyn Shultz: And if I can add one thing to that, Tovah. I think that a lot of providers have heard of a laryngeal cleft, and they think it's super rare. Like, the original stats are one in every 10-20 thousand births. But recent studies have shown that in kids with chronic respiratory symptoms that need a rigid scope, it's up to 7.5 percent of those kids actually have a laryngeal cleft. So we're really working on awareness [00:22:00] amongst the general public. Parents, but also providers to consider this and evaluate for it. It could be occurring. Those type one clefts are so much more common than people realize.
Tovah Feehan: Yeah, considering it as part of the differential. And I'm really, I was going to ask you about that. That was perfect about, you know, just the rise in identification of these clefts and the numbers have gone up quite a bit just with advances in science and.
Carolyn Shultz: Yeah, and, and another thing that I think is important is- so once people realize that this exists and they're looking for it, you know, it is still a rare anomaly, it's more common than we thought, but it is still rare, and that means that not everybody has experience with it as a provider, so it's important to refer that patient to an experienced ENT who has seen this before and knows how to deal with it.
Tovah Feehan: [00:23:00] Yeah, that can really make a difference.
Caetyn Groner: That was our struggle is we knew we were at a great place and we knew we were with great physicians. But the trick was that person having experience specifically with type one laryngeal clefts and having successful surgical repairs and all the questions that we then learned to ask.
That was key. Finding an aerodigestive team was key for my son's not recovery, but surgery and repair and he can drink thin liquids now and having that, that aerodigestive team was key for us.
Carolyn Shultz: Another thing too that I don't know if people are aware, but this diagnosis and treatment is, at least it appears to me to be fairly nuanced. And
Tovah Feehan: Oh yeah.
Carolyn Shultz: There is not consensus among ENTs in a variety of ways [00:24:00] on how you're going to treat it, what we do about it. So I just want, I think it's important for people to know that, that different ENTs handle it differently so you're not *talking at the same time*
Tovah Feehan: That's really good to point out and even the identification is not it's not standard. So, for example, some ENTs will call it a laryngeal notch. But that's a stage one cleft. And, and so I think finding, the more we can unite and come together with common language similar to IDDSI where we all know what we're talking about, and we, and we all start to talk to each other about outcomes, and I'm finding better outcomes with stitch repair when they don't have an NG tube, or, you know, different things, like, the more we communicate with each other the more we'll be able to help these families quicker and have better outcomes.
Caetyn Groner: Yes. *Talking at the same time*
Carolyn Shultz: And that's really the ultimate goal of LCN and our website [00:25:00] and our Facebook group. We're trying to bring all stakeholders together in this community to have open communication, right? We have to identify what the problems are in order to solve them. So that's how we see ourselves. It's just providing a space for our community to discuss these issues.
Tovah Feehan: Yeah, and I was talking about, you were talking about treatment options and how there's variability in how different ENTs approach it, and I was talking about variability even in diagnosis, but can you talk a little bit about treatment options?
Carolyn Shultz: Yeah, sure so I know that with type 1 clefts, feeding therapy is recommended by most ENTs, at least to try. There's, that's a whole, though, can of worms in my book because There's so many questions that our parents have about feeding therapy, like, what kind of feeding therapy, how do I find a qualified therapist, how long should it last, like, there's a [00:26:00] lot to that. Beyond the feeding therapy, then there are endoscopic procedures, so endoscopic means through the mouth, there's no incision a lot of ENTs will do a stitch repair.
Some will do injections where they inject a substance into the edges of the cleft to plump up those edges. Some will do a combo. They'll do the injection first, and then they like to see how that impacted the child, and then they may make a decision based on that impact if they go on to a stitch.
Others just say, no matter what, I'm going to do a stitch, so I'm not going to bother with the injection. They all have kind of a different method and experience with them. Luckily the endoscopic repairs are usually really well tolerated by kids and, you know, it's an overnight in the hospital, typically, there's always exceptions and [00:27:00] most parents see their child is feeling pretty good after two to three days, would you say, Caetyn?
Caetyn Groner: Yes, that was our personal experience and posing the question in our, our community group. That's generally the feedback I got is you know, within reason a few days, a couple of weeks, and then some on either end had, oh, immediately, no problem. We had pizza or the other end of, no, it took months to get my kid back to baseline. But most it's a few days, a few weeks.
Tovah Feehan: Of recovery time you're talking about?
Caetyn Groner: Yes. Yes. Of recovery time, pain, not sounding gunky, not coughing as much, getting off Tylenol, Motrin, that sort of thing.
Tovah Feehan: And one of the things on your website that is so profoundly helpful, you have so much research on there and you've broken down into types of research and how to break down the research that I think could be really helpful for families and clinicians alike. And I was just wondering, because [00:28:00] you mentioned the injection, the prolaryn injection putting out there that that is a temporary measure. And I'm just curious if you're finding that ENTs are trending more and more towards the endoscopic repair?
Caetyn Groner: In my son's experience.
Carolyn Shultz: Oh, sorry Caetyn.
Caetyn Groner: We were recommended the first group we went to, the first ENT we went to said, if I see a cleft, I'll do the injection first and we'll go from there. And so then the second, the Aerodigestive team where we are at now that was actually their same recommendation as well. So we were prepared for that. We knew it was temporary. We were told that some kiddos will get the injection and it might last a little longer than it's generally does or expected to, and they can kind of learn to compensate with a little bit of help over that period of time. So even though it does dissolve, it can help them learn to [00:29:00] compensate was what we were told in some cases, in some cases it doesn't work at all in my son's case, it worked immediately, his swallow study was great. I think two weeks after three weeks after we had a swallow study just to check baseline and then we weaned off the thickener. Yeah, I mean within days he was on thin liquids.
Tovah Feehan: Wow!
Caetyn Groner: Six weeks to the day, and they said maybe six weeks on the lowest end of it lasting, and then two months, three months for the longest end of the injection lasting. He was six weeks to the day, started coughing, aspirating, all the signs and symptoms.
Tovah Feehan: Oh my goodness!
Caetyn Groner: Immediate. So for us it was very clear. And then the stitch repair was easy for us. But that, it, it is a wide range. I know Carolyn had something else to mention.
Carolyn Shultz: Well, I was just going to say I think my statistics are right. But there was a international pediatric [00:30:00] otolaryngology group consensus study on how to manage type one laryngeal clefts in 2017.
And I believe the statistic at that time was that 60 percent of the ENTs preferred to just do a stitch repair and 40 percent were starting with an injection. I think that's accurate. And I did, but how that's changed, you know, that's older now, right? It's 8 years old. So how that's changed. I don't know.
But I did want to say that, as Caetyn kind of brought this up, that there are a few studies out there where they say that there's a long term benefit to an injection, and I just want to point out that if you really look at those studies, it's a very, very small minority.
So I don't want people to think like, oh, there's a 50 50 shot that if my child gets an injection, this is going to be all [00:31:00] they need. That's not what studies are showing. It's a very, very small minority of children. And when they say long term, I think, like, in a lot of the studies, that's like a year, so.
Tovah Feehan: In my experience, I, just anecdotally, I've worked with lots of kids with laryngeal clefts, and I think I've only had one who got the injection and then didn't, we, we weaned from thickener and he never needed a repair. Weaned him from his tube. One case, and it, very unusual, because he had a lot of comorbidities going on, but but yeah, I would say that that is highly unusual.
Carolyn Shultz: It is unusual, but it's great for those families. I don't want to discount that. It's amazing, right?
Tovah Feehan: It's great, yeah! Wonderful!
Carolyn Shultz: I just don't want people to get their hopes up and hold out for that because it's unlikely.
Tovah Feehan: Yeah, and I think it's also important to point out, that's why I was clarifying with you about recovery time from pain and from a procedure versus recovery because a lot of parents [00:32:00] and even SLPs who aren't as versed in laryngeal class would think like, oh, we're gonna get this quote unquote fixed and then tomorrow they're gonna like chug, you know, a Gatorade, I don't know, depending on how old they are. And, and it is really important when it comes to that follow up in feeding therapy after that, you know, they're, it's nuanced, like you mentioned, Carolyn, and then there's also protocols that can guide us in how to wean from thickener.
Carolyn Shultz: Yeah, totally agree. And just because somebody has their laryngeal cleft, it's shut does not guarantee that they're going to be able to swallow successfully. So that makes it even trickier.
Tovah Feehan: Yes.
Caetyn Groner: One thing I think families, maybe parents understand, but extended family might not understand as clearly. Or different providers that I want to point out is that the child has a structural deficit. I mean, [00:33:00] the cleft is there. And so they're trying to figure out and trying to eat with something that's not formed properly.
And so they develop habits and unique oddities to their swallow that aren't going to go away by closing the gap. You have to relearn those things to then they don't have a baseline for it. They were born with this. So that's where feeding therapy can take a while is that you have to remap that swallow and make it functional for something that was dysfunctional at it's, it's hard, hard to explain that sometimes to all the stakeholders that are involved in a child's feeding and swallowing.
Tovah Feehan: And I'm curious too, cause you serve so many, you're on the pulse of so many families across the country that have this diagnosis, and it's something I see, so I'm just curious if it's a thing. But difficulty with solids, like when it comes to introducing solids prior [00:34:00] to the repair. I have a lot of babies that I see that they're diagnosed with a laryngeal cleft and we're on thickened liquids and we're working towards, you know, a possible repair and they introduce solids. And it's like gag city, like really hard transition.
Caetyn Groner: *Talking at the same time* They are so unique.
Tovah Feehan: What's that?
Caetyn Groner: I was gonna say, my son is so unique and I've honestly connected with quite a few families who are similarly unique and that we also have allergic disorders.
Tovah Feehan: Oh, right. Cause you mentioned rare FPIES, not even FPIES is already unusual.
Caetyn Groner: Yes. He has atypical FPIES. So that means he has IgE, which he's outgrown his IgE allergy, thankfully. But he had IgE allergies and FPIES and they all mix in together. But a lot of the families I've been connecting with also have these allergic disorders, which makes us very curious about the genetic thing.
Tovah Feehan: A lot of potential research studies that were thrown out.
Caetyn Groner: So that, that completely derails solids when you [00:35:00] have, at least with the FPIES treatment, you have to introduce one food at a time for days at a time. And yeah, so that, that personally, that derailed everything. I'd be curious what you've heard, Carolyn, about children without allergic disorders.
Carolyn Shultz: On solids?
Caetyn Groner: Mm hmm.
Carolyn Shultz: Yeah my impression, this is not scientifically studied, is that fewer kids struggle with solids. They definitely do, but it's not as many. And I know for my son, he did not struggle with solids at all. And given the depth of his cleft, he was able to keep his lungs pretty clear once he had a G tube and a nissen fundoplication to stop reflux because he was, his, his lungs were very compromised when he was four months old from refluxing and aspirating that reflux. I, I have the impression they're [00:36:00] not doing nissens nearly as much anymore. I know there's a lot of complications that can occur with that, but that really did protect his lungs. So it was a good thing for him. One thing I was just going to point out with with my son, and that is occurring in other kids too is, you know, they have kids have this cleft, but there's differences in their anatomy still, obviously, right?
There's other things that can be going on different malacias and whatnot, but also they can have redundant tissue in that cleft area, which is what my son had. So some could have like a complete absence, I think of tissue, but he had like extra, but it's like our doctor explained it, you know, closing a curtain.
There's still a gap there. You can't see it versus like a curtain that's wide open. And so I do wonder if that aided him. I'm sure it did as he was swallowing. I'm sure that helps that redundant tissue and that redundant tissue is also another reason why [00:37:00] when you take a child in to do a rigid scope that that potential cleft area needs to be palpated with a probe because it may look like there's no cleft, but you stick a probe in there that tissue parts and there is a cleft. So that's really important.
Tovah Feehan: I wonder what happened to you, Caetyn, when you said you had your first scope and it wasn't identified.
Caetyn Groner: I am asking at our appointment in three weeks. I've got lots of questions. My oldest actually had scopes because he has, he's unique as well, but not quite as unique as my youngest.
And so I was comparing their pictures and they all look the same to me, so I have such- a lot of questions to ask our ENT and walk me through the minutia of it all. I had a mom reached out to me and some information she received that this area can be the size of like a pen [00:38:00] tip. It's a very, very tiny area and tiny differences that they're working with.
And so I'm curious and we'll follow up on that information. For type *talking at the same time* especially.
Tovah Feehan: Send it to the group chat, we'll be very curious.
Caetyn Groner: One thing that keeps popping into my head on several of the conversations we have that as professionals who read research and have in practice and deal with families were aware of this, but there's this thing called evidence based practice and it's not just research.
It's not just talking about what the studies show. It's not just what this physician or SLP or surgeon or whomever has experienced and it's not just what the family thinks. It's all three of these factors going into what treatment strategy, what things you should do for your child. So if parents are listening, I really hope that they take some of these thoughts that we've talked [00:39:00] about and bring it to their team and say, here's what I think, or here's our other diagnoses, why do we think these things work?
I think with the nissen procedure, you mentioned Carolyn, that it's not being done as much. We, it was brought up to us for my child, because he has persistent recurrent vomiting. And for us, it is not a great option simply because he has an allergic vomiting disorder, so he's gonna bust it open as soon as they place it but is it a great option for some families? Absolutely. But taking all those, not just the research, not just the clinician's experience or the provider's experience. And not just the family, but all three of those pieces are really important.
Tovah Feehan: Yeah, that's why I think, again, the Laryngeal Cleft Network is so important because-
Caetyn Groner: Yes!
Tovah Feehan: Bringing all those stakeholders together because it's very different for a physician who like, so thankful for our physicians. They just get to [00:40:00] spend way less time with patients and they don't get to hear all the little intricacies and the experiences that families have and then so to have families be able to connect with each other and be like your kid does that too oh my gosh did you get offered this or did they suggest that and then to have them know then what questions to ask physicians and physician for physicians and clinicians to get involved in those conversations like we're we can help each other. Well, Carolyn, you shared a couple of treatment options and then there was another treatment option that we didn't get to cover yet that you had experience with.
Carolyn Shultz: Right. So if endoscopic stitch or injection doesn't work, then there's always an open repair that they can do, which is a super invasive, serious surgery that nobody wants to undertake unless it's absolutely necessary, and it's only for type fours and a few type threes.
Generally, the endoscopic surgery will work. [00:41:00] Or ones, twos, and a lot of threes. With an open repair, they go through the neck, typically. And you, you know, the, the cleft is actually kind of near your backbone. So you've got to go through a lot of tissue to get there. And a lot of times, the patient will need a trach for a period of time.
My son had a trach for eight months. He got a G tube again when he was 19. So he had the trach and the G tube. And that's a really tough surgery. I'm not gonna lie. But thankfully, the vast majority of people with laryngeal clefts don't need that. But I just wanted to make sure people knew that that is another treatment option.
Tovah Feehan: Yeah. How's he doing now?
Carolyn Shultz: He's doing great. He took an entire year off from college. He's back in college now he's always been interested in [00:42:00] being a doctor, so he's on the pre med track, he's a microbiology major, really enjoying it, and he, you know, has such a unique perspective, so if he does choose to go on to medical school, I think he's going to be an incredible doctor.
And whatever he does, if he chooses not to. Growing up with this has a lot of impacts on a person and I think grows a lot of strengths in a person and makes you more resilient and know what really matters in life. And so whatever he chooses to do, I know that he's gonna be amazing at it.
Tovah Feehan: Yeah, he will definitely have empathy, that's for sure.
Carolyn Shultz: Yeah.
Tovah Feehan: So one thing that I wanted to mention, and it's something you talked about earlier, Caetyn, about, or, and I think you mentioned it as well, Carolyn, like finding experts, you know, and making sure that people have [00:43:00] this background. I want to throw out there and feel free to disagree, but in some rural areas or some areas you get your SLP and that's the first time that they're encountering this diagnosis.
And for people who are listening to who are like, I want to be able to help, but I just don't have that experience. My feeling is that you, the same way that we would have a family reach out for support, you need to make sure that you're reaching out for support with clinicians who, who are more versed in this diagnosis, that you have a line of communication open, that you're communicating with the Aerodigestive team that you're reading the research and that you're not making decisions on your own, that you're seeking counsel, but it doesn't mean that, like, okay, you have to say no to this case, like you can't take this case. That's how I feel about it, but I don't know if you would feel the same.
Caetyn Groner: I have been that rural SLP.
Tovah Feehan: Yeah.
Caetyn Groner: Fresh out of grad school, I was the only feeding therapist in [00:44:00] a small area of Texas. I was the only person willing to be a feeding therapist. And I happened to have experience in it from graduate school.
But I certainly didn't, hadn't seen some of my rare cases ever. And there's a few people that I'm like, that's probably the only time I'll ever see this diagnosis because it's so rare. It's finding a therapist who has the tools to learn and has, knows how to reach out to someone knows how to find a mentor knows how to access the data.
Tovah Feehan: And think critically, because regardless of the diagnosis, like you could have a stage 1 cleft and they're aspirating all the way up to purees. Like the staging doesn't necessarily indicate the function, and so being able to just take the individual in front of you. And when it comes to rare diagnoses, I mean, I, I'm many years in, and I see diagnoses all the time that I've never seen before.
But you just, you see like, okay, who's this person in front of me? What are they having trouble with? What can we, [00:45:00] where can we, how can we meet them where they're at? What's going on with the family? And then you take it from there and you, you know, you seek out more learning and information.
Caetyn Groner: Yes. Using their team, they've, a lot of these families have really good providers, but communicating with them and connecting with them and making sure you have all of, all of their medical information, that is something that I really struggled with in small town areas is I wasn't receiving all of like the data.
Tovah Feehan: Yeah.
Caetyn Groner: So I was able to get a big picture from these massive hospitals. I wasn't giving, I wasn't being given all the information. So making sure your clinician has all the information is willing to learn. And then as a clinician, gathering that information and, and having open communication with the family about their, like, get their feedback because they're very much a part of the journey. It's their kid.
Tovah Feehan: And most teams are really open in my experience to communicating. Like I've even zoomed in when I've had families travel. I've zoomed into [00:46:00] meetings, team meetings in Boston or wherever. So sometimes it just takes knowing like, oh, I can ask to, to zoom into that. And yeah. Or like I can email your provider. That's okay. Like, yes, that's really good.
Caetyn Groner: Yes. I think that was-
Carolyn Shultz: And I wanted to mention too Tovah, that is really important to have a team approach when you have this diagnosis. So, you know, we need an ENT, a pulmonologist, a GI, an SLP, maybe neurology, maybe genetics, whatever the individual needs are. I have seen a couple of cases where it doesn't seem to be a team approach and that the SLP is sort of making decisions without communicating with the other specialists. So that I, I think is concerning. It does need to be under an ENT overseeing the whole team. [00:47:00]
Tovah Feehan: Can you give an example?
Carolyn Shultz: Well, I mean, I just, I know of some parents who say that, you know, my SLP says my son doesn't need a stitch because of blank, blank, blank. And I don't think that that's within their area of expertise to make the decision. It needs to be the surgeon and everybody communicating together. But so sometimes, yeah, I'm not sure how that happens. Maybe there's you know, they don't have people who are experienced with laryngeal clefts that they're working with. And so it just sort of ends up happening that they're following the advice of just an SLP and not the whole team approach. I don't, I don't see it a lot, but I have seen it.
Tovah Feehan: Yeah.
Carolyn Shultz: It's been that worrisome.
Tovah Feehan: I know another question that gets brought up a lot in the, in the group that you've brought to me before, Carolyn, is families feeling like nothing's [00:48:00] really happening in feeding therapy, or like, is this normal in feeding therapy? And we can talk a little bit about that.
Carolyn Shultz: That would be great because people don't know what to expect, and then we do hear people saying like, we're not really seeing any progress, we keep going to feeding therapy, and the kid may have not, the child's laryngeal cleft may not be repaired.
Or maybe it is repaired, you know, there's a lot of variation, but when do you stop going to feeding therapy, like, or when do you try something new, because there are families who are struggling with not seeing continued progress and They're confused as to what to do.
Caetyn Groner: I hear that.
Tovah Feehan: Do you have things to say about that? Oh, okay.
Caetyn Groner: Yes, I've got a paragraph about this.
Tovah Feehan: Speak to us.
Caetyn Groner: Yes. This is a challenge I hear so much. And I feel like we as SLPs experience as well, especially if you work in not just feeding, so [00:49:00] at outpatient rehab, you're going to see all sorts of different patients, and I don't know if parents necessarily realize that you see articulation, so that's speech, you might see fluency, you might see social communication disorders, autism, language, you see so much you see birth to 18, unless you happen to specialize in something.
And there are clinics out there who are specializing in feeding therapy, but a little information about that. There's different types of feeding therapy. So when the three of us and aerodigestive teams generally are talking about feeding therapy for a child with a laryngeal cleft symptoms, their symptom is dysphagia, we need dysphagia therapy, which is a type of feeding therapy. Swallowing is part of feeding. But there's other types of feeding therapy. There's other ways other children and even one child with a laryngeal cleft may struggle in more than one area [00:50:00] is sensory feeding or oral challenges. You mentioned, Carolyn, that your son ended up having a really strong suck.
Well, that's something we work on is oral skills, being able to lateralize food and get food into your mouth. And that's a different type of dysphagia than what we're really referring to. All sorts of children with all sorts of diagnoses need different types of swallowing therapy and feeding therapy and it's dynamic.
It changes over time. So initially my son really just needed to be able to get liquid into his body without it causing an allergic reaction and causing aspiration and all that goes with that. So he really needed a therapist skilled in dysphagia specifically. And there's a whole set of treatment options that we can do based, based on the different issues with dysphagia.
We can do thickener, we can change the temperature of the liquid. [00:51:00] That changes things around. We can change positioning. There's so many different strategies that we can do, but if we're working on sensory feeding, when the child really needs dysphagia therapy, that's, you're not going to see change in the dysphagia because you're not working on the dysphagia, and I think families don't necessarily understand that and they don't necessarily know to ask for that nuance.
And this is where I get so passionate about the SLP having all the medical information because there has been cases where I don't get a swallow study report for a child with dysphagia, I'm unaware that that's what's going on. They've had all this background information or I'm getting just the radiologist report, not the SLPs report.
And I know to ask for that, but the parent doesn't so it delays things. Yes, I'm very passionate about this subject and families knowing what what to ask for. Ask your SLP. What are you, what are we working [00:52:00] on? What strategies are we using? And why do you think that that's going to change their swallow?
Or why do you think this hasn't helped their swallow? And in my son's case, the answer was he hadn't had surgery. He needed surgery. That's what fixed his dysphagia.
Tovah Feehan: Mm hmm. Yeah, I think for, for caregivers and for clinicians to make sure that the intervention matches the skill that we're trying to advance. Because a lot of times, and really using that pediatric feeding disorder framework. So thinking like, okay, medically, there is a laryngeal cleft, it has not been repaired yet. This is what their swallow looks like. They also have this atypical FPIES. Check. And then we have our nutrition. Okay. Well, we are really concerned about weight gain per the RD.
So we're thinking about this and like, what is their goal volumes and how much are they getting? Think about that. Okay, there's our second box. Then functional skills. Like, okay, for some of these kids, like, they haven't had as much experience. So they do have immature oral skills or they have other things going on.
So [00:53:00] like, here's what we're going to do to advanced texture or advanced their, their drink, oral drinking skills, and then that's our box. And then psychosocial, like there's a lot of stress with feeding because it hasn't gone well, and there's like trauma for all of us here. So what are we going to do to reduce the pressure surrounding mealtime and make this an enjoyable feeding experience for everybody?
And so I think if you use that as like a general framework, instead of being like, well, I want this type of feeding therapy, because when you use that PFD framework, then you're thinking about everybody, every child, even a child with a laryngeal cleft, those boxes are going to look different depending on them, their age and their family and their comorbidities and all of those things, their care that they've gotten up until that point.
So I think if we can like zoom out that way and then that can really help guide intervention because then we know like, okay, well right now. He sees the bottle and he's hysterically crying, so let's start there. Like, and your, and mom's shoulders are like, up here. And then, yeah, [00:54:00] and sensory definitely, like, falling into one of those boxes too, but I think sometimes we get really, like, stuck on, like, well, I do behavioral feeding therapy, like, I do, like, this specific training that I took therapy, and it's like, well, that's really nice, but there's a person in front of you that doesn't fit into a workbook. I also get very passionate about this. So, yeah.
Caetyn Groner: I think for parents, it's good to know that there's, there's two sides and we want to look for the therapist who's going to see everything and be able to look at your child as a whole and if they may not have the skill set for every part, they can either learn or they have a partner with them that can help fill those gaps or they can send you to somewhere else who might be more knowledgeable on the dysphagia, whereas they can help with all the other aspects, there's, there's just so many nuances to intervention that are hard and some of it's setting specific, are you getting home health and your visits are in the house and what, what does [00:55:00] that dynamic look like, or is it early intervention and you're getting it once a month, there's, there's so many different factors that we understand as therapists, but I don't know that families are aware of that they can ask for these things and they can ask questions or change settings if needed.
Carolyn Shultz: Can I interrupt you, Caetyn? Because you bring up such a good point and I'm afraid I'm going to lose it. How can our families find a qualified therapist that can help them with dysphagia feeding therapist? What are the avenues to find them? I get that question so much. I don't know the answer.
Tovah Feehan: One thing that I would look for in a feeding therapist is somebody who isn't doing therapy to your child, but somebody who is working alongside you and it's a conversation. You're the expert on your child, [00:56:00] I'm an expert on feeding and swallowing. My knowledge isn't going to do anything if I don't know about your specific child in your family.
And so, making it a partnership versus this authoritarian model where it's like, I'm gonna tell you what to do, or like, your child's gonna come and sit here and I'm gonna do therapy to them. That's just, that's not even what feeding is. Like, what you were sharing earlier, Caetyn, like, it's social, it's cultural, it's, you know.
And so, I think finding someone who is partnering with you as a caregiver would be number one. And then just asking, I would just ask them, like, what is your experience working with children who have dysphagia? Like, can you talk to me about that? Finding someone who understands the swallow study report.
Like, if they don't even understand the swallow imaging if they can't wrap their head around that, then it's going to be really hard to wrap their head around how to improve it. And for students or for newer SLPs who are listening, if you- drill down on your normal anatomy and physiology, if you don't know normal anatomy and physiology, [00:57:00] then there, it's, it's impossible to build on that into when things aren't going well.
So, drill down. Feeding milestones, normal anatomy and physiology, so that when something is atypical, you can identify it, and then you can start thinking about how are we gonna, how are we gonna help.
Carolyn Shultz: So there's no like certification, right? There's no like dysphagia certification that would make it easy.
Tovah Feehan: I'm sorry. Yeah. That was a really long answer to your question.
Carolyn Shultz: No, no that was really good to hear all about. That was very valuable, but I'm like, you need something quick and easy. Like,
Caetyn Groner: Yeah.
Carolyn Shultz: There isn't one, right? I'm just asking.
Caetyn Groner: I don't think so. I think asking, asking your physicians first. So the aerodigestive team would probably be your best bet since they see the outcomes they follow you and they know what you're looking for in terms of the swallow.
We live eight hours from our digestive team. They might not be able to point us out on a [00:58:00] map. So that's not realistic for my son. If I weren't an SLP, what would I do? Ask our pediatrician and say, okay, we went to this first place and I feel like they don't really know what to do. Do you have another recommendation or asking that SLP, asking SLPs you do know, calling around.
I think I helped one family. I did a Google search for pediatric dysphagia therapy in this small town. And that yielded a few results. And so my vetting was, okay, do they still live in that town? What are they practicing? What are they saying? How are they involved in this in any way, if they're putting that information out there?
Honestly, in this specific case, we found a university, and there was a lot of articles published in their town. I've never heard of the university before, amazing that we could connect them with that therapist simply because the university had some publications about what they were doing in their feeding [00:59:00] clinic.
Just digging for the types of information that we're talking about and asking others. I think personally as an SLP, if a family comes to me and they're like, okay, we want an expert, we want the expert, at least for a second opinion, can you help me find someone? Absolutely. I would love having been through what we've been through, like I would love to help some family in that way. If there's someone else out there, even if it's a travel, you travel to them for a second opinion. Yeah. There's not a quick answer.
Carolyn Shultz: That's, that's helpful. And I appreciate that. What about how long to stick with therapy? You know, if you've plateaued, what do you, what, what is a parent to do in that situation where that may be the only thing they have to work on right now is working with a feeding therapist?
Maybe they've already had, an endoscopic intervention, or maybe for [01:00:00] some reason they're waiting, I don't know, but that's what they've got to hold on to right now, and they're not seeing any progress. What should they do?
Tovah Feehan: For me, I go back to that pediatric feeding disorder framework. So I'm never going to waste a family's time doing the same thing week after week and expecting a different result, because that is the definition of insanity.
And it is a waste of their time and their resources and their child's precious development. So that's not happening. But if we're not getting anywhere, then either, you know, are we missing something medically? Is there an adjustment that we need to make from a nutrition perspective and talk to the team about that or about scheduling?
Is there, is there a skill that we're still working towards and like, what other ways can we advance that skill? Or can we pivot? And then, that psychosocial piece, like, okay, like, what is, if there's, if there's still, like, stress or aversion, like, why is this happening and what adjustments can we make? So again, just going back to, like, what is the [01:01:00] barrier here to us making progress?
Not like, oh, your child's plateaued, so we're gonna discharge you from therapy. Like, no, do some self reflection, reach out to the team. And I feel like I sound so mean, but I get very passionate about it because I feel, I really feel for these families who, they miss out on so much time, you know, because they're not getting the support that they need. So, that is what I would say.
Carolyn Shultz: That sounds great, but also does there come a point where you just say like, okay, we're done for a while, we're going to take a break.
Tovah Feehan: Yeah, but there should be a reason. *Talking at the same time* Yeah, like maybe you've hit a point where you have worked with this family and they feel really confident doing all the strategies at home and you are waiting for that repair.
Well, then yeah, like maybe it makes sense to to pause intervention because there's nothing else for us to work on right now. Really, the only thing left is for you to get this repair and then come back and I'm going to help you, you know habilitate because they never had a normal swallow, but I'm going to help [01:02:00] you habilitate your swallow.
So yeah, that can definitely happen too. But again, if you would just, if, if the clinician and the family would like, just think it through, like, well, what are we working on here? Like, what are we doing? Especially when it's a family that they're going to a clinic. And they're doing the same exact thing in the clinic that the family is doing at home week after week.
Like, that makes me want to like peel my skin off. I'm like, what? That's not intervention. That's not even intervention. What is that? It's a home program. Let them go home.
Caetyn Groner: That's what we ran well, we didn't get to the point of, ah, because we know better as an SLP, but we reached that exact point you're talking about, Carolyn, prior to my son's repair was, we have tried everything under the sun. We have a feeding tube now. So we have a safe, a way to get him safely eating and drinking. So that's no longer a concern. We have the proper thickness to offer foods. I know how to implement, how to offer his, his water in different [01:03:00] ways so he can practice that skill.
I know how to offer solids, what solids we're offering, et cetera, et cetera. Like all those boxes are checks. We've not had any change in neurological development. His physical skills, which were behind, are now on track, like every single thing is checked off, and the only thing left is this isolated problem, the cleft, and the answer for us was, we just need the surgical repair, and that's, that's, we took a break, and there was nothing, we were just going to show up and chat, which is, great, but that's not therapeutic.
Tovah Feehan: Yeah. This is like a whole soapbox, but I think that if we could grab hold of, like, really empowering caregivers and educating them, like, I know in part as part of your story, Caetyn, like, you weren't even taught how to properly IDDSI test. Like, if we could really, like, grab hold of that, we would have shorter wait lists for therapy.
[01:04:00] We would have families who are feeling more competent as caregivers, like, it would be very, very helpful. They wouldn't be traveling so much to all these appointments because very early on they could, like, feel good about what they're doing and keep helping their child at home.
Carolyn Shultz: I think there's some areas to improve upon for our community, understanding so I hope that people will come to our Facebook group and SLPs and families, providers and have these discussions. It's effective. Like we're, we're going to come up with solutions. I know it.
Tovah Feehan: Yes. I know. I get, I sometimes I get ranty about this stuff.
Carolyn Shultz: No, no I get it.
Tovah Feehan: We're coming together for solutions.
Caetyn Groner: Yes. It's so important though. And we see, we see how it impacts the child's development as a whole when things are delayed [01:05:00] or things are more traumatic than they necessarily could have been for the child and then the family unit as well I mean it is so hard seeing your child struggle medically and have to endure different procedures and blood work and all these different factors that really it It's, it's beyond just being able to swallow water.
Tovah Feehan: Yeah.
Caetyn Groner: It's, it's the whole, whole picture.
Tovah Feehan: Mm hmm.
Carolyn Shultz: So true.
Caetyn Groner: That's part of feeding therapy is the whole picture.
Tovah Feehan: Yes. Yes. I love that.
So one thing that a lot of families experience is even after this cleft is identified and repaired, there's trauma there from feeling like they were crazy or they weren't heard for so long. And so I'm just wondering, Carolyn, if you can speak to that.
Carolyn Shultz: Yeah, I hear that so much. And I personally experienced that. And, you know, I label it as cognitive dissonance, where [01:06:00] a provider is trying to well, they're well intentioned, they're trying to reassure you and saying everything's fine but yet your instincts are screaming at you that your child cannot eat, and those two are butting heads. That's an extremely difficult position to be in as a parent.
It's really rough, and you don't know what's happening, but you just know that your child can't eat.
Caetyn Groner: It is such a challenge and especially if you're dealing with more than one potentially rare diagnosis, it's so confusing and so hard. And I absolutely experienced that as well with my son, something that helped us and then led to me knowing I was in the right- I was with the right providers and he was in the right hand was, I would note, I would take notes on everything, take pictures. And I still [01:07:00] do. Cause we're still searching for answers in some ways. But when I found the right people, they would say, I don't know the answer, but I hear you and we're going to find out let's, let's dig in.
And that is when I knew I was in the right hand. So if. Looking for the right SLP maybe, or any provider really, I think that was pivotal to us and that has now allowed me to heal some of that trauma that you're talking about, Carolyn, is, okay, there is something going on. And it's not just my responsibility to figure it out now. It's theirs as well. We're on the same team.
Carolyn Shultz: And just having somebody acknowledge reality. That they may not understand what's happening, but we hear you and yeah, that is a problem. Your child can't eat. That is an actual problem. Just validating that reality is [01:08:00] huge.
Caetyn Groner: Yeah.
Tovah Feehan: Mmm. That's a really good tip for healthcare providers to take.
Caetyn Groner: Yes.
Tovah Feehan: Okay.
So we are going to be linking to Laryngeal Cleft Network, your amazing website, in our show notes and your Facebook group in our show notes and social media, you're @LaryngealCleftNetwork.
Carolyn Shultz: Yes. Yep.
Caetyn Groner: Yeah.
Carolyn Shultz: Facebook and Instagram.
Tovah Feehan: Okay. Is there anything else that we need to talk about? I could talk to you guys forever.
Carolyn Shultz: Some other ways that people can stay informed, we do have a newsletter that they can subscribe to. I did want to mention too that the CARE study is being administered out of Boston Children's Hospital and it's looking for the genetic causes of laryngeal clefts.
We have a CARE study page on our website that people can go to to learn how to see if they're eligible for the study and to [01:09:00] sign up. We just had an informational webinar last weekend and when we get the recording of that, we'll put that on that page as well. Yeah, so those are all the ways to just stay in the loop with communication. But I did want to just say that all of us at LCN are so appreciative to all the support we've received since we've launched our website. First and foremost, like, we're just, we honor every single patient. Like, Caetyn was just talking about watching your, your child's struggle and my heart just goes out to every single person born with this birth defect.
It is a tough road. It really is. And I, I know that in time, that gap in when someone's born and when they can get this under control is going to shrink. And I want that to be really short and ultimately someday we think like this may not even be [01:10:00] a thing with advances in genetics and all. So anyhow, we, we do have patient journeys on our website too that providers and families can go read and just kind of get a better idea of what families go through.
So I encourage everyone to do that. I also just want to thank like the many parents who have reached out got a little mini army of them now, they're amazing. They're working on awareness and social media and advising us. And these people are in the thick of things too. Like their kids are sick and needing surgery and all this stuff, but they still find time to reach out and be a part of this movement and I'm so appreciative to them.
We also appreciate the providers that are attempting to help our community. They may not have all the information, they may not be super experienced, but they're trying and we [01:11:00] thank you. Some, some providers have specialized in this their entire career and that's amazing. They're an amazing resource for our community.
I like to also just call out our medical advisory board. They're very generous with their time and expertise. Caetyn is on there and she's done so much like writing blog articles and providing guidance. She's been amazing. And also we're extremely lucky to have Dr. Rahbar from Boston Children's Hospital and Dr. Rutter from Cincinnati Children's Hospital. Thanks to all of them. Our donors. I'm sorry, I'm going off here, but there's so many people in our community who are making this happen. And it's, it's not, it's not a few people like we need everybody to come together and, and they are, and our donors are helping us to be able to make all of this happen behind the scenes.
So [01:12:00] they're huge. And then just finally, my co founder, Deb. She's amazing. She brings so much to LCN. She's just like, so calm and loving and wise. She keeps me grounded. And our entire LCN board, who's like, always working behind the scenes. You guys have no idea what, what all is going on and what we're trying to accomplish.
And we're working really hard and we just want to invite everybody to get involved because we all need to work on this together to move the needle and make things better for people who are born with this birth defect.
Thank you so, so, so much for everything you're doing to raise awareness about laryngeal clefts and for coming on today and all the time you took to prepare to come on today and, and to talk together.
I really appreciate it.
There's one really important thank you also, and that's to you, Tovah. So, thank you for having this podcast and inviting us onto it. This is [01:13:00] huge. It helps us bring awareness and build our network and our community, and I appreciate all that you do for all of your patients and providers and everybody, so thank you so much.
Tovah Feehan: Thanks, Carolyn. I'm, I'm just honored that you're here and I, I'm excited that LCN exists because it's very needed. So, yes, we're going to link all that stuff in the show notes and also the travel grant, we didn't mention that, we're going to link that in the show notes too.
Carolyn Shultz: Yes.
Tovah Feehan: Because that's really helpful for people who need to travel to get help, yeah. So yeah, thanks for tuning in and we'll see you next time.
Carolyn Shultz: Thank you.
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