Vikash K. Modi (0s):

There is no contraindication that if you've got a cleft palate or a cleft lip or a, you know, learning-based feeding, they've got the mechanical dexterity, introduce food into your mouth, given that the portions of the correct size, we always want to make sure that, you know, whether it'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 contra-indication. 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. I've done over a hundred palate 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 (48s):

Essentially, it's just making sure that they have the specialty feeders 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 (60s):

Hey there, I'm Katie Ferraro, Registered Dietician, college nutrition professor and mama of seven specializing in baby led weaning. Here on The Baby Led Weaning Made Easy Podcast, I help you strip out all of the noise and nonsense about feeding, leaving you with the competence and knowledge you need to give your baby a safe start to solid foods using baby led weaning. Well, hey guys, and welcome back! Today, we're talking about baby led weaning for babies with cleft lip, cleft palate or cleft lip and palate. Now, while these conditions are very rare, there are a lot of resources out there that will make blanket statements and say things like baby led weaning is not indicated for, or it's contra-indicated in the following conditions and a list of things, which almost always includes cleft palate and sometimes even cleft lip.

Katie Ferraro (1m 51s):

So I wanted to talk to an expert in the field and see if this is really true, like can babies with cleft palate, if they have a repair of the cleft palate, really not do baby led weaning and why? So July is when I wanted to do the interview because it's also national cleft and cranial facial awareness month. So my guest today is Vikash K. Modi , MD Dr. Modi is an associate professor and chief of pediatric otolaryngology at the head and neck surgery center at New York Presbyterian Hospital and Weill Cornell Medical Center. He's the co-director of the Cornell cleft and craniofacial team and Cornell Velopharyngeal Center. So Dr. Modi is going to help answer some questions about transitioning to solid foods for babies with cleft lip and cleft palates.

Katie Ferraro (2m 34s):

Here's Dr. Modi. Well, Dr. Modi, thank you so much for joining me today.

Vikash K. Modi (2m 37s):

Thank you for having me.

Katie Ferraro (2m 38s):

All right! 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 (2m 47s):

Sure. All right. So craniofacial anomalies in general, have a one in 200 incidence but cleft lip without a cleft palate has about an incidence of 1 in 1000 live births. Cleft palate alone has an incidence of about 1 in 2000 live births. The male to female ratio for cleft lips is 2:1. And for cleft palates, it is 1: 2.

Katie Ferraro (3m 9s):

This is interesting. 1 to 2 male to female

Vikash K. Modi (3m 10s):

Cleft lip, male to female is 2:1. And cleft palate, the ratio is male to female is 1 to 2.

Katie Ferraro (3m 20s):

Ah! Interesting

Vikash K. Modi (3m 20s):

And it's highest among Native Americans followed by Asians, followed by Caucasians and followed by African-American or Black.

Katie Ferraro (3m 28s):

July is national cleft and craniofacial awareness month. Can you tell us a little bit about the work that your team does and what types of children and families do you support?

Vikash K. Modi (3m 36s):

So I am at Cornell in New York City in Manhattan, and I'm the co-director of the Weill Cornell craniofacial team and cleft team. And there we treat children to all sort of congenital anomalies of the oral cavity, the nose, the mouth, the eyes, even cranial vault, people that have a premature suture lines and the most common being cleft lip and cleft palate. Sometimes it can be associated with a small jaw or a micrognathia, and those children will have what we call Pierre Robin 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 (4m 12s):

And pardon my ignorance, but are cleft lip and cleft palate is this genetic, are there risk factors for them? What causes it?

Vikash K. Modi (4m 18s):

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, the cleft parents, 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 cleft palate can occur. So, you know, there is some genetic component, but then we also see it where there is no family history at all cleft lips and palates. And those kids can also develop one and that's just spontaneous.

Katie Ferraro (4m 50s):

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 (4m 57s):

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 incidence of having cleft lips and palates. Just like there are syndromes you can get if there are certain needs sort of vitamin deficiencies and for taking medications during pregnancy that can affect it. But that's usually not the most common causes.

Katie Ferraro (5m 15s):

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 (5m 37s):

So first I think it's important to differentiate cleft lip alone from cleft lip and palate 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 and 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. There have a lot of times they're not able to breastfeed at all.

Vikash K. Modi (6m 16s):

So these children will oftentimes need a specialty feeder bottle, like a Haberman nipple or a brown specialty feeder, because you can feed with the bottle without suction 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 oftentimes we'll need a specialty of bottle feeder.

Katie Ferraro (6m 38s):

So what about when they move into solid foods? 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 or formula is providing the majority of nutrition

Vikash K. Modi (6m 51s):

So cleft palate repairs typically done between 10 to 14 months of age. Sometimes it's pushed back a little further. Sometimes it can be done a little bit earlier, but the majority kids, cleft palate repair 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 (7m 22s):

Talking about like we wait until six months of age to start solid foods. Generally when babies start showing the other reliable signs of readiness to feed from 6 to 10 months of age, I think this is really a crucial area because parents are interested in, okay, how can my baby 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 going to 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 6 to 10 month window?

Vikash K. Modi (8m 2s):

Absolutely. There is no contraindication if you've got a cleft palate or a cleft lip for a, you know, learning-based feeding, you know, if they've got the mechanical dexterity, introduce food into her mouth, given that the portions of the correct size, we always want to make sure that, you know, whether it's great, it's, 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.

Katie Ferraro (8m 28s):

So 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 babies grow and develop properly, especially because if that repair is going to happen, like kind of right smack dab in the middle of this critical weaning period.

Vikash K. Modi (8m 43s):

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 feeding 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 (8m 59s):

And it really makes me happy to hear you say that because honestly, when you look at contra-indications 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 6 to 12 month old baby, can they feed themselves if they have a cleft palate?

Vikash K. Modi (9m 23s):

So let's put it this way. I've done over a hundred palates 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 affects swallowing and dysphagia, that's a whole separate category we're talking about. So I would say syndromic cleft palate. I think you've got to be a little 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, cleft lip babies, you really should pursue a solid introduction at the appropriate age.

Katie Ferraro (10m 7s):

Awesome. Are there any nutritional problems that we tend to see in children that have either cleft lip or cleft lip and palate or cleft palate like any risk for micronutrients deficiency? I'm not aware of any, but that's not my area of expertise by any stretch.

Vikash K. Modi (10m 18s):

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 is not given the appropriate bottle and if they're not given the appropriate bottle and they're trying to suck a bottle of that suction based, then they become dehydrated because they're not getting enough calories and not getting enough liquids. And those children get admitted to the hospital, but that's usually the first month of life. First two months of life where either the cleft dismissed or the incorrect feeding mechanism has been given.

Katie Ferraro (10m 51s):

So in baby led weaning, we advocate for skipping the sippy cup from a nutritional standpoint, dentition from an oral motor language development. And we began offering babies liquids out of an open cup around 6 months of age. And then once they master that then a straw cup. But I can imagine that with the babies, your 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 out of a special bottle?

Vikash K. Modi (11m 16s):

That's actually what we do in preparation for surgery. So surgery is typically done around 10 months of age and around 9 months of age, they'll meet with our craniofacial speech as well as therapists. 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 transitioned completely 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 because straw cups are also suction based. And the other issue is after the palate is repaired, although they can generate suction. In the first 2-3 weeks after palate repaired, we don't want any pressure on that palate. We also don't want them sucking because we want that palate to heal.

Vikash K. Modi (11m 57s):

So usually straw cups, sippy cups, and even suction based bottles are not recommended after

Katie Ferraro (12m 0s):

Open cup all the way ?

Vikash K. Modi (12m 2s):

Open cup all the way.

Katie Ferraro (12m 3s):

There's so much of this is aligning with what you would do for a neuro-typical 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 and feeding. I feel like you're almost saying I don't wanna put words in your mouth, but it's going to 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 dietitian occupational therapist. What do we do after surgery?

Vikash K. Modi (12m 42s):

So, surgery is 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 as well. And we do it as a first case on a Monday morning. So that'd be a 7:30 case. Monday morning surgery is 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 speeches, swallowing 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, any, anything that can affect our suture line or an acidosis. The other thing we do is we actually do have kids for those 2 weeks, you put them in no-nos.

Vikash K. Modi (13m 25s):

No-no are armed guards and the armed 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. 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 too. 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. After three weeks, then you can introduce normal solids as age appropriate.

Katie Ferraro (13m 51s):

So we normally at 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 imagine that in the few weeks post-op, if they're in these armed guards, like it may be the case where the parent would need to spoon feed. And we would obviously for the baby's safety and wellbeing, in that case, it will be appropriate for parents to put the spoon in the mouth. But after that, when they get out of the armed guard, can they resume you doing the preloaded spoon and bringing it to their mouth?

Vikash K. Modi (14m 16s):

Absolutely, absolutely. That's what we usually have the parents, since 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 pouch because oftentimes trays come to 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 (14m 38s):

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 (14m 53s):

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 a, you know, pee diapers, as long as the pees 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 (15m 8s):

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 (15m 33s):

It probably would happen 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 cleft, and I'd say the majority of the kids we see are non syndrome plus, but even the syndromic kids who we're seeing, who have Treacher Collins, or if they've got Crouzon or if they've got Van Der Woude. 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 syndromic has a syndrome. It has a genetic condition in the child that doesn't have a genetic condition.

Vikash K. Modi (16m 13s):

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 them 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, and something like that, I think you're going to have to be a lot more concerned about feeding, but if it's a child, who's got, you know, a Treacher Collins, Crouzon, Van Der Woude , some of these other syndromes that are associated with cleft lip and palate that don't have cranial neuropathy and don't have associated dysphagia. Those children, I would treat as if it's a non syndromic cleft, from a feeding perspective.

Katie Ferraro (16m 49s):

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

Vikash K. Modi (17m 8s):

Sure. If you just google Weill 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 craniofacial team here at Cornell. So if you go to the pediatric otolaryngology website at Weil 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 ACPA credited, which is also a nice thing. It's a multidisciplinary clinic where we've got oral surgeons, speech therapists, swallowing therapists, genetics, prosthodontist, everybody works sort of in collaboration together. So you can find more information on our website.

Katie Ferraro (17m 44s):

Well, I hope you guys enjoyed that episode with Dr. Modi. I think he really kind of gave a maybe sense of relief to the parents listening who have babies, certainly that have cleft lips. I think he made that very apparent that there's really no interference or problem that we would anticipate with feeding, but for the babies with cleft lip and cleft palate or just cleft palate, certainly some considerations, but just to reiterate what he said with the appropriate therapies, there's certainly no reason why these children cannot succeed with baby led weaning. I'm going to link up all of Dr. Modi's resources, including links to where he works and his teams. In case you want to learn more for your baby, that may have a cleft lip or a cleft palate. And that will be on the show notes for this episode, which you can find at BLWpodcast.com. Thanks so much for listening and I'll see you next time.