Michael Smith, MD (Host): This is Pediatrics in Practice, the CME podcast. I'm Dr. Mike, and with me are Dr. Hannah Bergman, Brenda Fetter and Leah Hunt from Children's Mercy. Today we will explore cleft feeding, practical tips for pediatricians in a panel discussion. I'd like to start with Leah. What are the most common feeding challenges faced by infants with cleft lip or palate?

Leah Hunt, OTR/L, MOT, CNT, NTMTC: Yeah, I think that feeding is one of the most challenging things that any new parent has to take on with any baby, regardless if they have clefting or not. It's a stressful experience. There's a lot of emotions tied into it. Clefting can make this a little bit more complicated, obviously. We are here to help. We have a whole clinic and team of people that loves this and is passionate about it. And so while there is going to potentially be some challenges, and this might be a little bit stressful, just like it would be if you had any other baby; we are here and the vast majority of our babies do absolutely wonderful, with all of their feeding journeys. We have a cleft clinic that has feeding therapy with Speech and OT. We have nutrition services, we have lactation services for support. And a huge benefit to our clinic is that we have psychology for stress support for both the parents and the kids as they get older.

And so this is a hard transition for any new parent to bring home a baby if there's something different about the baby, obviously it just feels a little bit more challenging and, and we're here.

Host: Brenda, how do cleft related structural differences impact oral motor development, I think that's a and swallowing as well. Right? I think that's a big question for a lot of pediatricians and even parents, and what early interventions can support safe feeding?

Brenda Fetter, MA, CCC-SLP, CLC: Yes, absolutely. So we know that babies born with cleft lip and palate are at not at an increased risk of aspiration. So having like food or liquid enter the lungs when they're swallowing, which can be a great relief. If there is an associated like syndrome or genetic difference with the clefting, that can elevate that risk.

But for the most part, we don't expect these kiddos to have issues with aspiration, which is a good thing. But we do know that there are parts of feeding that are impacted by clefting. We usually break it down kind of looking at breast and bottle feeding first, and with that, if it's only a cleft lip, there's typically minimal impact on feeding.

Sometimes the babies may have a little bit of a loss of the milk out of the corners of their mouth, or like a little bit of a weak lip seal. But over all these babies feed well and we don't expect any issues with growth or weight gain. With cleft palate, with or without a cleft lip; that is where we see the biggest impact on feeding.

With typical sucking and swallowing, it's based on a closed system. The baby has to generate pressure differentials that all lead to a safe swallow. With clefting, there's an opening in that system. And that impacts the baby's ability to generate adequate pressures and adequate suction for sucking. So this inadequate suction impacts breast and bottle feeding. With breastfeeding, the cleft palate makes it nearly impossible for the baby to efficiently express breast milk from the breast. Which can lead to weight gain concerns and dehydration. We would recommend that the family provide expressed breast milk via a specialty bottle, and we'll talk about more of those in a little bit.

But part of the care through clefting is also working with lactation if the family chooses to provide expressed breast milk. For bottle feedings, we have a variety of specialty feedings. They contain a specialty valve that accommodate for that lack of suction and allow the child or the baby to just munch on that nipple versus truly sucking and having those pressure differentials.

And so we can talk, a lot more about that in detail, a little bit later too. Another thing to consider is that babies with an unrepaired cleft palate, may have some nasal loss. So you might notice a little bit of the milk or the formula leaking out of the nose. This can also happen with purees.

 Sometimes these babies will vomit through their nose. And so that can be a little upsetting, but it's really not unexpected and shouldn't cause any significant difficulties for them.

Host: You know, Brenda, sticking with this same question real quick. If a child has the cleft lip or palate corrected, does that mean the any motor development issues are also corrected, or do they still have to do some therapy?

Brenda Fetter, MA, CCC-SLP, CLC: So typically these kiddos, um, these little babies and older children with repaired clefts, they will not have long-term impacts on their feeding skills. And so typically once those structural issues are corrected, they don't go on to have more issues. Sometimes we may need dental help with like occlusion for chewing if those teeth aren't lining up quite well.

But usually these kiddos are amazing at adapting to the structures that they have at the moment. And so we don't typically see a huge need for kind of ongoing feeding therapy.

Host: And so just for parents so they understand all this real quick, when you're dealing with a cleft lip or palate, we're really talking about a structural issue that can be corrected. It's not necessarily motor development, nerves, that kind of stuff.

Brenda Fetter, MA, CCC-SLP, CLC: Right. And Dr. Bergman, feel free to jump in as we're talking about this, but yes, from my standpoint, like they're not at increased risk for aspiration again, unless there's like an associated syndrome or more, kind of going on there from like a genetic standpoint. But really we do expect once we find the right bottle and the right system for these kiddos, they will hopefully thrive.

I think that's the biggest takeaway is we may have some problem solving in the beginning, but they should thrive and fairly early on, even prior to repair.

Host: Dr. Hannah, how does the timing of surgical repair influence the feeding strategies just kinda laid out by Brenda? And what should pediatricians know about the pre and post-op feeding care?

Hannah Bergman, MD: Sure. So one thing that I would like to really stress here is that even though each of these babies may have a cleft lip or a cleft palate; each cleft is really different, and so we try to have sort of a broad guideline for when we want the lip and the palate repaired, but it really depends on how the baby is doing, how feeding is going, and what else is going on with the family or with the kiddo's health issues.

 So I would say there's plenty of wiggle room, but broadly, the cleft lip, depending on how severe it is, is usually repaired around three to six months of age. The lip itself, as Brenda mentioned, has really minimal impact on feeding, And so after surgery, we expect these kids to go right back to feeding, however they were feeding before.

So breastfeeding or bottle feeding is totally fine, if it works, just go right back to it pretty much as soon as they're awake from anesthesia after surgery. The palate is a little bit of a different story. So Brenda talked too about how the palate is used for generation of suction, but it's also used to make specific speech sounds, we call them plosives. It sounds like P's and D's where you're trying to push air out the mouth. That seal that she was talking about also needs to form for those sounds. So we try to time the repair of the palate for when the baby is starting to babble. Typically, this is around a year of age, but a lot of the time we do see kiddos who are language delayed and so we delay the repair.

Once they start trying to make those sounds, that's when we do the repair. Very rarely if there is some sort of genetic difference or syndrome that makes it impossible for the baby to develop speech at any point; we don't repair the palate and that's okay in those instances, but those are very special instances.

So typically repaired around a year of age. The postoperative, sort of protocol after a palate repair is very different. And so, we will talk a little bit more about that later. But we have special sort of open mouth cups, non suction cups and no bottles or anything else in the mouth for a few weeks afterwards because it can damage the repair.

Host: So let's talk about what we really need to do, parents, caregivers, when it comes to feeding before surgery. Now, Brenda, you went through a lot of safe feeding techniques. You talked about certain bottles, et cetera. Can you expand on that? Now that we're looking at managing, feeding before surgery, like can you go into some of the specific bottle systems, positioning strategies you recommend?

Brenda Fetter, MA, CCC-SLP, CLC: That's a very good question and I would really like to focus more on the palete side of it. Like we've been mentioning cleft lip, in and of itself does not require any really special, um, feeding bottling systems or those types of things. It's the palate itself.

We need a bottle that is going to compensate for that lack of suction. And so all the bottles that I'm going to talk about, all have a specialty valve in them that essentially allow the baby to just kind of munch on that nipple versus needing to seal around the nipple, create the suction with the tongue and that closed system. One of our go-to bottles, or the one that we probably use the most often is the Dr. Brown specialty feeder. Essentially, it looks exactly like a typical Dr. Brown bottle, which many of our families appreciate. But the big difference is, is there is a small blue disc that gets inserted into the nipple, and that kind of helps with that lack of suction and makes feedings much more efficient.

 This bottling system is great because, it has a wide variety of flow rates, so I can use all of the typical Dr. Brown nipples from an ultra preemie up to the fastest flowing y-cut nipple without changing the nipple shape. It's available in a wide neck and a, a narrow nipple shape. So again, it has a lot of flexibility and works really well for most of our patients.

We also have a couple other's that we don't use as frequently, but there is like the Modela special needs feeder. People that have been practicing for a little while may know it as the Haberman. It has two nipple options, kind of a standard and a mini, there's three flow rates that you just adjust depending on how it's, um, positioned in the infant's mouth.

It can be useful for infants that have like a small oral cavity or maybe some other anatomical differences, but, it's definitely, a little bit less adaptive than say like the Dr. Brown system. So we don't typically use it as frequently. There's also the pigeon nipple for cleft lip and palates, and that is only one flow rate.

It tends to be a very fast flowing nipple. So again, it has very specific uses, but we typically, our go-to is going to be that Dr. Brown specialty feeder. And then when we use that one, some of the things that we discuss with families is limiting feedings to 30 minutes or less. And this is great for kiddos and babies, cleft, no cleft, it doesn't matter. We don't want them feeding for longer than 30 minutes. If that feeding extends beyond that time, they risk burning more calories than they're taking in due to their elevated heart rate and respiratory rate. It's just a huge aerobic workout for them. So the more compact we can make those feedings, the better.

We recommend feeding a baby with a cleft palate in a more upright position. We don't want them totally just straight upright, but definitely, pretty elevated just to minimize the amount of milk or formula that may be going into the baby's nose. We recommend frequent burping. These babies tend to take in more air when they're feeding, and so burping a little bit more frequently, often makes feedings more comfortable.

And then feeding therapy is always an option. We can trial different bottles, different flow rates. We can help with strategies and other techniques. And obviously that is something that we offer through the Cleft Lip and Palate Clinic at Children's Mercy. But there's also options for like early intervention, through birth to three, tiny k, infant toddler, kind of depending on what state the family lives in. We partner with community hospitals, as well, and local outpatient clinics because it is fairly specialized care. And so we want to make sure that those local providers feel as comfortable as possible treating these patients.

Leah Hunt, OTR/L, MOT, CNT, NTMTC: And I can jump in because actually, these kiddos, they learn to eat foods too, while they still have their palate unrepaired. And so there's some strategies for that too. So like Dr. Hannah said earlier, they get their palate repaired and they need to be completely off of a bottle. They need to be able to drink from an open, free flowing cup, and eat soft solids to be able to meet their nutrition needs after their palate repair.

And so there are some little things about that, if you don't mind me jumping in.

Host: No ple. Please go ahead cause one of the questions I wanted to get into was you know, coming from a general pediatrician perspective, you know, what are some of the signs that we should be looking out for, pre and post surgery that there may be some problems and so maybe can you touch on that a little bit as well?

Leah Hunt, OTR/L, MOT, CNT, NTMTC: Yeah, absolutely. Like we've kind of talked about, we expect that in the bottling stage, once we figure out the appropriate flow rate and bottle system, that these kids are gaining weight and gaining good weight, in preparation for all of their surgeries.

But then this transition period of being able to come off of a bottle and be able to eat, purees and a wide variety of soft table foods, drinking lots of their fluid from just an open, free flowing cup is a big transition. And so, we want pediatricians to know that they should be checking in on that.

Be asking, how is your child doing with the transition to table foods? Are they able to drink from that cup that cleft palate clinic has been showing you? The biggest thing with those cups is they can't have any valves in them. They can't have spouts that would go into the mouth after surgery.

 So either just a completely open, free flowing cup or the cup, if it has a lid, it cannot have a spout or anything that would go into the mouth. So there's some cups out there. B Box is probably one of the most common ones that our families use, Reflo, Infa Trainer. But honestly, even sometimes, just like the old school Yeti Cup, that just has, you know, the open, free flowing lid, those work really well too.

We have lots of different cups and strategies that we can use with kids. We will work with them in clinic, but then we kind of tell families, go home, try these things and reach back out to us if they're having any difficulties. And so really we, we want to hear sooner rather than later because we want to make sure that that kid isn't having to push back their palate surgery because they're having a hard time transitioning to foods or cups.

Host: Dr. Hannah, there's a lot going on here. There's a lot of collaboration that obviously has to occur. You have therapists, surgeon, pediatricians. How can pediatricians best coordinate care?

Hannah Bergman, MD: This is a great question because there are so many moving parts, and in our multidisciplinary clinic at Children's Mercy, we try to streamline things as much as we can while we have the families there. But then they go back into the world and they're seeing their local pediatrician And so this is a something that we're always working on and always striving to do better.

But just basically, we will see new babies, say it's, it was an undiagnosed cleft, if it's diagnosed on fetal ultrasound, we typically do meet those families ahead of time if we can in our fetal health visits. But if it's a new baby who is born with an unexpected cleft, of the lip or palate, if they are born at Children's Mercy, we will typically see them while they're inpatient before they go home just to touch base with the family and meet them.

If they're delivered elsewhere, we try to touch base with them and see them in-person for a big team visit, within the first two weeks of life. People that are involved in, that first big team day are ENT, audiology, plastic surgery, our whole feeding team, which includes Brenda and Leah and dieticians, nutritionists, occupational and feeding therapists and speech therapists as well.

And then we also have clinical psychology and cleft orthodontics at that first big, long initial visit. We haven't talked about the cleft orthodontics piece yet, but for our infants that have really wide cleft lips and cleft nasal differences, we will start things like lip taping. And we have a nasal clip that we place to help with sort of overall improvement in cosmetic outcome. So all of those things kind of happen at that first visit within the first week or two of life. So at that visit, usually we can identify any feeding difficulties that are existing. Sometimes things evolve and change over the first few weeks of life.

But if there's going to be a big problem, we usually know it by that visit. So the most important thing that our community pediatrician partners can do is engage with the plans that we make with our feeding team for those babies and their families at that first visit. Very often we are trying to track down weekly or every other weekly weight checks that typically are are usually done at the PCP office. And so, you know, making sure that these weights are happening on the same scale at the same office, kind of in the same situation is really important for making sure that we are able to accurately track how these kids are doing. My request would be, after these weight checks are happening, it would be awesome if our partners could have either a nurse or somebody from that office, from the PCP office or the pediatricians themselves, share those updated weights with our clinic. And then if we're identifying something that needs to change, we can make that happen really quickly. So the best way to do that would be to call our cleft clinic administrator, Mikayla Falk, and her phone number is (816) 760-5829. And she will be able to use those weights, get them to the right people, and then our team can reach out if any changes need to be made.

 And it lets us identify any feeding challenges or, you know, weight loss early so that we can troubleshoot things. It may be changing formula concentrations. It may be changing positioning and maybe switching to a different specialty feeding system. But it basically lets us figure out what's going on and get back on track as soon as we can.

We want our kiddos to be gaining really, really beautifully and sort of on a normal trajectory before they undergo surgery. It's a big insult to the system and we expect a little weight loss around surgery time. So it's really nice to make sure that we're, we're got everything optimized before we could do surgery.

Host: I gotta tell you, this is a lot of fantastic information and I want to thank all of you for coming on. Is there any one of you that just wants to give the audience, the listening audience a, a nice summary of cleft lip palate feeding, that you think is really important that maybe we missed.

Leah Hunt, OTR/L, MOT, CNT, NTMTC: We love these kids. We are very passionate about our babies who have clefting, and no family or pediatrician is ever bothering us. And so, this is a stressful process for any kid learning how to eat. And it's just a little bit more stressful when you have clefting.

We are here, we are not annoyed when you call us or you ask us any of your questions. If you are having issues with weight gain, if you are having feedings that are lasting a long time, if you are coughing or choking or having any concerns, please reach out to us. The sooner the better because we are so happy to help and we would rather deal with it early on, then have issues come up and delay surgeries down the line.

Hannah Bergman, MD: One other thing I would say is that members of our team are really happy to come out to your clinic for in-person workshops on feeding tips and tricks or more specific information for your groups. We can set that up really, really easily if you just call that coordinator.

 We would be happy to do it. And, there is a lot of sort of support groups and things on social media for families that exist outside of the Children's Mercy sphere. There's varying degrees of accuracy in that information that's shared and that can be really, really important for families that are looking to connect with other's who are going through a similar cleft journey.

For either practitioners or families who are looking for resources that are more evidence-based; if you're looking outside of the Children's Mercy resources, we would recommend, going through the American Cleft Palate Craniofacial Association or the ACPA at acpacares.org. They have a lot of info on their website for both healthcare providers wanting to learn more about cleft and it's multidisciplinary management and for families who are just looking for resources that are made specifically for them. So I would definitely recommend checking them out if you're looking for more info.

Host: Great stuff. Please continue to do what you're doing because I know it's making a huge impact. For more information, go to cmkc.link/CMEpodcast.

If you liked this podcast, please share it and check out the entire podcast library for topics of interest to you. This is Pediatrics in Practice, a CME podcast. I'm Dr. Mike. Thanks for listening.