Once Upon a Dance (0s):
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Vikash K. Modi, MD (3m 16s):
There is no contraindication if you've got a cleft palate or a cleft lip for you know, learning based feeding. If they've ve got the mechanical dexterity introduced food inter mouth. Given that the portions of the correct size, we always wanna make sure that you know, whether it's s grapes, you're cutting up those grapes really small, you're cutting up, you know, longitudinally as opposed to horizontally. So as long as the size of the bolus or the size of the food is appropriate for that child's age, then yeah, there's really no contraindication Cleft lip alone where it doesn't affect the palate, doesn't affect the gumline. Feeding should not be an issue. Breastfeeding should not be an issue. Sucking should not be an issue. All the functional aspects of feeding should not be an issue with an isolated cleft lip. I've done over a hundred pallet repairs over the 12 years I've been here and we start purees and solids around six months of age and we've never had a problem, never had an issue, never had a child go down the wrong pipe or aspirate.

Vikash K. Modi, MD (4m 4s):
Essentially, it's just making sure that they have the specialty feed so that they can have the adequate amount of liquids. And from a solid standpoint, there really is nothing in regards to preparation. It's whatever's the baby's comfortable taking whatever they like.

Katie Ferraro (4m 16s):
Hey there, I'm Katie Ferraro, Registered Dietitian, college nutrition professor and mom of seven specializing in baby led weaning. Here on the baby led weaning with Katie Ferraro podcast. I help you strip out all of the noise and nonsense about feeding, giving you the confidence and knowledge you need to give your baby a safe start to solid foods using baby led weaning. If your baby has a cleft lip or cleft palate, you most certainly have already had to navigate some pretty significant feeding challenges. I know a cousin of mine recently had a baby born with a cleft lip and helping them with their breastfeeding journey was very eyeopening for me. She had a surgery, they're now preparing for solid foods and she's like, when I look around online, Katie, it says, babies with cleft lip and cleft palate might not be able to do baby led weaning.

Katie Ferraro (5m 4s):
Is that true? In today's episode, we're gonna talk about what starting solid foods looks like for babies with cleft lip cleft palate or both, and What parents need to know about self feeding, drinking from an open cup, preparing for cleft palate repair, and getting back to age appropriate foods after surgery. My guest today is Dr. Vikash Modi. He's a pediatric otolaryngologist. He's a head and neck surgeon who serves as the chief of pediatric otolaryngology at Cornell. He's also co-director of their pediatric c craniofacial team. There he specializes in cleft palate and then the feeding, swallowing, and speech concerns that accompany c craniofacial conditions. I also want to point out that this interview was recorded a while back, but I brought it back as I was doing research for my cousin and also I've been doing some work with Jill Rabin, who is the co-author of the Adapted Baby led weaning book.

Katie Ferraro (5m 54s):
So if you have a baby with a feeding challenge and certainly a cleft lip cleft palate more so falls under that, you definitely need to check out Jill Raven and Gill Rapley. They co-wrote the adapted baby led weaning book. This interview came out before that book was available, but I do wanna just list it as a resource for you if you're interested in this topic. And I'll drop that book in the description where you're listening to or watching this episode. But having cleft lip or palate does not automatically mean that your baby cannot learn how to self feed. Dr. Modi believes that these babies deserve the right to self feed, as do I, as does Jill Raven's and Gill Rapley. So if you're looking for information, there's not a ton of it out there about baby led weaning and these conditions.

Katie Ferraro (6m 34s):
This is a very valuable conversation. I love the conversation because for parents who've already gone through a lot with feeding, I think Dr. Modi does a really great job of explaining exactly what may need to be modified and in what situation and where does not need to be modified at all because sometimes you like look at lists online, I'll just be like, these babies can't do baby led weaning. And we know through Jill Raven's work, particularly in the baby led adapted, baby led weaning world and Dr. Modi's work that these babies can learn to self feed and where does that timeline look like. So with no further ado, here is Dr. Vikash Modi talking about How Cleft Lip and Cleft Palate Babies can Succeed in Self feeding.

Vikash K. Modi, MD (7m 14s):
Thank you for having me.

Katie Ferraro (7m 15s):
Alright, so for those out there who are not familiar with cleft lip or cleft palate, can you briefly explain this condition and how common are clefts?

Vikash K. Modi, MD (7m 23s):
Sure. Alright, so c craniofacial anomalies in general have a one in 200 incidents, but cleft lip without a cleft palate has about an incidence of one in 1000 live. Burts cleft palate alone has an incidence about one in 2000 live Burts the male to female ratio for cleft lips is two to one, and for cleft palates it is one to two.

Katie Ferraro (7m 44s):
This is interesting, one to two male to female

Vikash K. Modi, MD (7m 47s):
Cleft lip, male to female is two to one and cleft palate, the ratio is male to female, is one to two.

Katie Ferraro (7m 53s):
Ah, interesting.

Vikash K. Modi, MD (7m 54s):
And it's highest among Native Americans, followed by Asians, followed by Caucasians, and followed by African American or black.

Katie Ferraro (8m 1s):
Alright, so July is national cleft and craniofacial awareness month. Can you tell us the litter bit about the work that your team does and what types of children and families do you support?

Vikash K. Modi, MD (8m 11s):
So I am at Cornell in New York City in Manhattan, and I'm the co-director of the wild Cornell c craniofacial team and cleft team. And we treat children with all sort of congenital anomalies of the oral cavity, the nose, the mouth, the eyes, the even cranial vault, people that have premature suture lines and the most common being cleft lip and cleft palate. Sometimes it can be associated with a small jaw or micro nappy and those children will have what we call pure rob band sequence. So there's a full spectrum, some are associated with syndrome, some are not associated with syndrome. So that definitely affects the feeding and swallowing depending if it's syndromic or non syndromic.

Katie Ferraro (8m 46s):
And part of my ignorance, but are cleft lip and cleft palate, is this genetic, are there risk factors for them? What causes this?

Vikash K. Modi, MD (8m 53s):
That's a great question. So a lot of it is can be genetic and some of it is not genetic. So if you have two unaffected parents and you have one child with a cleft parent, there's a 4.4 chance of the second child developing a cleft lip or palate, a cleft palate alone. If one child is affected with a cleft, there's a 2.5% chance if one parent is affected with a cleft, there's a 3.2% chance that a cleft lip or palate can occur. So you know, there is some genetic component, but then we also see it where there's no family history at all of cleft lip and palate and those kids can also develop one and that's just spontaneous.

Katie Ferraro (9m 25s):
So it's not thought that there's something that happens during pregnancy or that causes it, it's just something we don't understand.

Vikash K. Modi, MD (9m 31s):
It's something that we're still sort of working out. There are medications that if you take while you're pregnant can have a higher incident of having cleft lip and palate, just like there are syndromes you can get if there are certain sort of vitamin deficiencies and or if you're taking medications during pregnancy, that can affect it, but that's usually not the most common cause.

Katie Ferraro (9m 48s):
So parents of babies with cleft lip or cleft palate who have struggled with breast and possibly bottle feeding, they anticipate that these feeding challenges will continue when their baby is ready to begin solid foods. Are these concerns validated? And what sort of food challenges might a six month old baby that you typically see have just so parents can be aware of what may be coming down the pike?

Vikash K. Modi, MD (10m 9s):
So first I think it's important to differentiate Cleft lip alone from cleft lip and palate. Okay, from cleft palate alone, Cleft lip alone where it doesn't affect the palate, doesn't affect the gum line feeding should not be an issue, Breastfeeding should not be an issue, Sucking should not be an issue. All the functional aspects of feeding should not be an issue with an isolated cleft lip. If it's a cleft lip in a palate or just a cleft palate, that's when you start to develop functional issues with feeding. So the palate essentially separates the mouth from the nose and when there's a hole in that palate, that's when the child loses the ability to suction. And so when they can't suction, breastfeeding is a challenge and they have a lot of times they're not able to breastfeed at all. So these children will oftentimes need a specialty feeder bottle like a haberman nipple or a brown specialty feeder because you can feed with a bottle without suction.

Vikash K. Modi, MD (10m 58s):
That's more of a mechanical swallowing as opposed to a suction based swallowing while breastfeeding is suction based swallowing and the sucking sensation. So children with cleft palate will have issues with swallowing and, and oftentimes will need a specialty, a bottle feeder.

Katie Ferraro (11m 12s):
So what about when they move into solid food? So is it normally something they can have repaired by then or are they still dealing with the issues of sucking? Like if we're moving away from an era where breast milk formula is providing the majority of nutrition,

Vikash K. Modi, MD (11m 23s):
So cleft palate repair is typically done between 10 to 14 months of age. Sometimes it's pushed back the litter further, sometimes it can be done the litter bit earlier, but the majority of kids cleft palate is repaired between 10 to 14 months of age. Now in regards to introduction of solids, it all depends on when the solids are being introduced. Typically solids and it's a moving target, you know, are introduced around six months of age, but solid feeding or pureed feeding is not based on suction at all. So it's typically given with a spoon. And those kids do not have issues with eating or swallowing solids or purees of any kind.

Katie Ferraro (11m 55s):
So if we're talking about like we wait till six months of age to start solid foods, generally when babies start showing the other reliable signs of readiness to feed from six to 10 months of age, I think this is really a crucial area because parents are interested in, okay, how can my babies start learning the mechanics of using more solid foods, but we're waiting until the repair that might happen between 10 and 14 months of age. So you mentioned spoon feeding, but what about for babies that are gonna be doing different textured foods like soft, solid strips of food if they have their dexterity and they can pick up the foods and bring it to their mouth if it doesn't require suction based feeding as breastfeeding was, can they succeed in self-feeding in that six to 10 month window?

Vikash K. Modi, MD (12m 35s):
Absolutely. There is no contraindication if you've got a cleft palate or a cleft lip for you know, learning based feeding. You know, if they've ve got the mechanical dexterity introduced fluent mouth, given that the portions of the correct size, we always wanna make sure that you know, whether it's s grapes, you're cutting up those grapes, you're really small, you're cutting up, you know, longitudinally as opposed to horizontally. So as long as the size of the bolus or the size of the food is appropriate for that child's age, then yeah, there's really no contraindication. So

Katie Ferraro (13m 0s):
For babies with cleft lip or cleft palates, what are some of the limitations or modifications that parents and caregivers need to make to make sure their baby grows and develops properly? Especially because if that repair is gonna happen, like kind of right smack dab in the middle of this critical weaning period.

Vikash K. Modi, MD (13m 16s):
So essentially it's just making sure that they have the specialty feeder so that they can have the adequate amount of liquids. And from a solid standpoint, there really is nothing in regards to preparation. It's whatever, whatever's the baby's comfortable taking, whatever they like, I would just treat it like a normal child aside from the liquid part.

Katie Ferraro (13m 32s):
And it really makes me happy to hear you say that because honestly when you look at contraindications to starting solids with baby led weaning, unfortunately people who don't specialize in this area will just rip off a list of conditions that you can't do baby led weaning with and they always include cleft palate. So if you could just reiterate that again what you said, like should it be on that list, I guess like a six to 12 month old baby, can they feed themselves if they have a cleft palate? So

Vikash K. Modi, MD (13m 57s):
Let's put it this way, I've done over a hundred pallet repairs over the 12 years I've been here and we start purees and solids around six months of age and we've never had a problem, never had an issue, never had a child go down the wrong pipe or aspirate. Now granted if they've got other syndromic conditions or if they've got other cranial nerve neuropathies that affect swallowing and dysphagia, that's a whole separate category we're talking about. So I would say syndromic cleft palate, I think you've gotta be the litter bit careful with, just make sure that they're doing appropriate pacing and I would push the envelope too much with syndromic children, especially if they are having issues with swallowing. But in general, non syndromic cleft palate or cleft lip babies, you really should pursue a solid introduction at appropriate age.

Vikash K. Modi, MD (14m 38s):
Awesome.

Katie Ferraro (14m 40s):
Are there any nutritional problems that we tend to see in children that have either cleft lip or cleft lip in palate or cleft palate? Like any risk for micronutrient deficiency? I'm not aware of any, but it's not my area of expertise by any stretch.

Vikash K. Modi, MD (14m 52s):
Yeah, I mean the diet they're getting is the same as other babies. If it's breast milk, it's it's breast milk in a bottle. So we don't really see any dietary sort of deficiencies in children. The only thing we have seen is if the child's not given the appropriate bottle and if they're not given the appropriate bottle and they're trying to suck a bottle that's suction based, then they become dehydrated because they're not getting enough calories and not getting enough liquids and, and those children get admitted to the hospital. But that's usually in the first month of life, first two months of life where either the cleft is missed or the incorrect feeding mechanism has been given.

Katie Ferraro (15m 23s):
Hey, we're gonna take a quick break, but I'll be right back.

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Katie Ferraro (16m 47s):
So in baby LED weaning, we advocate for skipping the sippy cup from a nutritional standpoint, dentition from a oral motor language development, and we begin offering babies liquids out of an open cup around six months of age. And then once they master that, then a straw cup. But I can imagine that with the babies you are seeing, given the oral condition and limitations that are associated with sucking, what do you recommend as far as transitioning to open cup drinking for these babies who have been having to drink outta special bottles?

Vikash K. Modi, MD (17m 14s):
That's actually what we do in preparation for surgery. So surgery's typically done around 10 months of age and around nine months of age they'll meet with our craniofacial speech and swallow therapist. And at that time the introduction, what they're introducing is a open cup. So these are babies that have just been on a haberman or a brown specialty feeder and they transition completely to an open cup. We actually don't do sippy cups at all because sippy cups again are suction based. We also don't do straw cups as well 'cause straw cups are also suction based. And the other issue is after the pallet is repaired, although they can generate suction in the first two, three weeks after pallet repair, we don't want any pressure on that palate. We also don't want them sucking because we want that palate to heal. So usually straw cups, sippy cups, and even suction based bottles are not recommended after.

Katie Ferraro (17m 59s):
So open cup all the way,

Vikash K. Modi, MD (17m 60s):
Open cup all the way.

Katie Ferraro (18m 1s):
So much of this is aligning with what you would do for a neurotypical healthy child. It's nice to hear for these parents just so that they know that they've had to make all these accommodations earlier on in feeding. I feel like you're almost saying, and I don't wanna put words in your mouth, but it's gonna get easier for you from a feeding standpoint as you move into the weaning period, but you're definitely dealing with the surgery. So in the post-surgical situation, you mentioned kind of needing to lay off of the pressure. Are there certain types of foods, I mean I would assume you can't be eating, we don't even feed babies hard, crispy or crunchy foods, but what sort of like post-surgery therapy? Do these children meet with the speech and language pathologist? A dietician, occupational therapist? What do we do after surgery?

Vikash K. Modi, MD (18m 39s):
So surgery's typically done around 10 months of age and I typically do my surgeries on Mondays because then I'm there Tuesday, Wednesday, Thursday, Friday they're not getting some on-call doctor and our speech and swallow and we do it as a first case on a Monday morning. So it'll be a seven 30 case Monday morning. Surgery's typically completed, they go to the floor or the ICU depending on their, on their level of complexity. And then our speech and swallow therapist will come by around noon, between noon and 3:00 PM and reintroduce the pre-op feeding therapy they were getting. So open cup some speech and swallow therapists recommend a syringe feeds, but majority kids don't need syringe feeds and it's mainly purees. We don't want anything that's sharp. Gotcha. Any, anything that can affect our suture liner or anastomosis. The other thing we do is we actually do have kids for those two weeks, we put them in no-nos, no-nos are arm guards and the arm guards go along their arms so they can't bend their elbows 'cause we don't want children bringing their hands into their mouth because that clearly has germs on them and that can affect our suture line as well.

Vikash K. Modi, MD (19m 33s):
So we don't want kids sucking on their thumbs hands in the mouth. We keep those on for two weeks. Now if they're under direct supervision, we let them take the arm guards off to, you know, as long as they're not putting toys or any other foreign objects in their mouth and it's usually purees for the first three weeks. Okay. After three weeks then you can introduce normal solids as age appropriate.

Katie Ferraro (19m 49s):
So we normally in baby led weaning, if we do purees, we put it on a preloaded spoon, you put the spoon in the baby's hand and have the baby bringing the hand to the mouth. I can't imagine that in the few weeks post-op, if they're in these arm guards, like it may be the case where the parent would need to spoonfeed and we would obviously for the baby's safety and wellbeing, in that case it would be appropriate for parents to put the spoon in the mouth. But after that, when they get outta the arm guards, can they resume you doing the preloaded spoon and bringing it to their mouth?

Vikash K. Modi, MD (20m 13s):
Absolutely. Absolutely. That's what we usually have the parents do. So we have the parents practice that before the surgery when there is an open palate. So after surgery when all of a sudden they're feeding out of a spoon, you know, the child's not upset, they're used to it. This is their typical way of feeding. One thing we don't also want is we don't want them sucking on the pouches. 'cause oftentimes purees come in the pouches and we don't want the kids putting their pouch in the mouth and exerting suction for the first three weeks afterwards.

Katie Ferraro (20m 35s):
One of the biggest feeding concerns that all moms parents caregivers have is whether their infant is feeding well. Like it's sometimes harder. It's not like objective measurements like, am I doing a good job? What are some red flags that parents at home can watch out for as signs of poor feeding in cleft babies that are just starting solids?

Vikash K. Modi, MD (20m 51s):
I mean, I guess that's a good question. I think weight gain is one of the biggest ones. You know, dirty diapers, weight gain and and looking for, you know, pee diapers. As long as the peas and poops are coming out fine and the child's gaining appropriate weight, then there's really nothing specific to a cleft baby.

Katie Ferraro (21m 5s):
Cool. And any final words of support for our parents who are listening? Again, they'll see these lists that say baby led weaning may not be appropriate for the following babies. And it always lists cleft palate. Sometimes it says cleft lip, which you have definitely told us. Like that does not affect feeding at all. What can we do to help these babies succeed in self-feeding at that important transition to solid foods? When I know they're probably also stressing about having the cleft palate repaired coming, you know, a few months later too.

Vikash K. Modi, MD (21m 29s):
I'd say probably what happened if I had to just guess why these sort of guidelines have come out is I think they're lumping all cleft babies together. They're putting all the syndromic clefts with the non syndromic clefts, and I'd say the majority of the kids we see are non syndromic clefts. But even the syndromic kids we're seeing who have treat your colons or if they've got croons or if they've got vanderwood. So all these syndromic clefts, majority of those children can feed well. But if you've got a child who's got charge syndrome, now that is a syndrome that affects the palate, can affect the lip. But in those kids they've also got cranial neuropathy. So I would say let's divide it into this child is syndrome, has a syndrome and has a genetic condition, and the child that doesn't have a genetic condition.

Vikash K. Modi, MD (22m 10s):
If it is found, if they don't have a genetic condition, then I would resume all normal sort of feeding protocols and I would treat 'em as if they didn't have a cleft aside from the bottles. If they are syndromic, then let's take a deeper dive into what sort of syndromic condition they have. If it is a charge syndrome, well then I think yeah, in something like that, I think you're gonna have to be a lot more concerned about feeding. But if it's a child who's got, you know, treater columns, kons vanderwood, some of these other syndromes that are associated with cleft lip and palate that don't have cranial neuropathies and don't have associated dysphagia, those children I would treat as if it's an on cleft from a feeding perspective.

Katie Ferraro (22m 46s):
Well, thank you so much for your time, Dr. Modi. This has been hugely informative and I think a lot of our parents out there are just breathing a huge sigh of relief to know that this next stage of feeding is probably gonna be easier than the first one. So thank you for your words. And could you tell us where can our audience go to learn more about the work that you and your team are doing at Cornell?

Vikash K. Modi, MD (23m 1s):
Sure. If you just Google Wild Cornell Medicine cleft and craniofacial team, you'll find us, if you even look up pediatric otolaryngology, because I'm in the ENT department and you know, in the ENT department, we specialize in feeding as well as speech as well as swallowing. So we actually run the C craniofacial team at Cornell. So if you go to the pediatric Laryngology website at Weill Cornell Medicine, you'll find our craniofacial team listed under there. And then we've got a brochure there. We've got all the information about our multidisciplinary team, which is also a CPA credited, which is also a a nice thing. It's a multidisciplinary clinic where we've got oral surgeon, speech therapist, while therapist, genetics, prosthodontist, everybody works sort of in collaboration together so you can find more information on our website.

Katie Ferraro (23m 40s):
Well, I hope you enjoyed that conversation with Dr. Vikash Modi. We were talking about cleft lip and cleft palate and babies who all babies deserve the right to learn how to self feed. I appreciated his insight, especially probably the litter, bit more clinical than a lot of the stuff we do here on the podcast, but I know we have a lot of clinicians who listen and this was a topic that I had been wanting to cover for a while. So I'll put the show notes with all the resources that Dr. Modi mentioned online@blwpodcast.com/148, and a very special thank you to our partners at AirWave Media. If you like podcasts that feature food and science and using your brain, check out some of the podcasts from AirWave Media. We're online@blwpodcast.com. Thanks again for listening and I'll see you next time.

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