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Cleft Feeding: Practical Tips for Pediatricians · Pediatrics in Practice: A CME Podcast

• 0:01
  Mike (Host): This is Pediatrics in Practice, the CME podcast.
• 0:04
  I'm Dr.
• 0:05
  Mike, and with me are Dr.
• 0:07
  Hannah Bergman,
• 0:08
  Brenda Federer and Leah Hunt from Children's Mercy.
• 0:13
  Today we will explore cleft feeding practical tips for
• 0:17
  pediatricians in a panel discussion.
• 0:20
  I'd like to start with Leah.
• 0:22
  What are the most common feeding challenges faced by infants with cleft lip
• 0:29
  Leah Hunt, OTR/L: Yeah, I think that feeding is one of the most
• 0:33
  challenging things that any new parent has to take on with any baby.
• 0:37
  Regardless if they have collecting or not.
• 0:39
  it's a stressful experience.
• 0:41
  There's a lot of emotions tied into it.
• 0:43
  collecting can make this a little bit more complicated.
• 0:45
  Obviously we are here to help.
• 0:47
  We have a whole clinic and team of people that loves this
• 0:51
  and is passionate about it.
• 0:53
  And so while there is going to potentially be some challenges, And this might be
• 0:58
  a little bit stressful, just like it would be if you had any other baby.
• 1:02
  We are here And the vast majority of our babies do absolutely wonderful,
• 1:07
  with all of their feeding journeys.
• 1:09
  we have a cleft clinic that has feeding therapy with speech and ot.
• 1:13
  We have nutrition services, we have lactation services for support.
• 1:17
  And a huge benefit to our clinic is that we have psychology for
• 1:21
  stress support for both the parents And the kids as they get older.
• 1:24
  And so This is a hard transition for any new parent to bring home a baby if
• 1:28
  there's something different about the baby, obviously it just feels a little
• 1:31
  bit more challenging and, and we're here
• 1:33
  Mike (Host): Brenda, how do
• 1:35
  cleft related structural differences impact?
• 1:39
  Oral motor development, I think that's a And swallowing as well.
• 1:44
  Right?
• 1:44
  I think that's a big question for a lot of pediatricians and even
• 1:47
  parents, And what early interventions can support safe feeding.
• 1:53
  Brenda Fetter, MA: Yes, absolutely.
• 1:54
  So we know that, babies born with cleft lip and palate are at not at
• 1:58
  an increased risk of aspiration.
• 2:00
  So having like food or liquid enter the lungs when they're swallowing,
• 2:04
  which, can be a greatly relief.
• 2:06
  if there is an associated like.
• 2:07
  Syndrome or genetic difference with the clefting that can elevate that risk.
• 2:11
  But for the most part, we don't expect these kiddos, to have issues with
• 2:15
  aspiration, which is a good thing.
• 2:17
  but we do know that there are parts of feeding that are impacted by clefting.
• 2:22
  We usually break it down kind of looking at breast and bottle
• 2:24
  feeding first, and with that, if it's only a cleft lip, there's
• 2:28
  typically minimal impact on feeding.
• 2:31
  Sometimes the babies may have a little bit of a loss of the milk out
• 2:34
  of the corners of their mouth, or like a little bit of a weak lip seal.
• 2:38
  But over all these babies feed well And we don't expect any
• 2:41
  issues with growth or weight gain.
• 2:43
  With cleft palate, with or without a cleft lip.
• 2:47
  That is where we see the biggest impact on feeding.
• 2:51
  with typical sucking and swallowing, it's based on a closed system.
• 2:55
  The baby has to generate pressure differentials that
• 2:57
  all lead to a safe swallow.
• 3:00
  With Clefting, there's an opening in.
• 3:02
  System, And that impacts the baby's ability to generate adequate pressures
• 3:07
  and adequate suction for sucking, So this inadequate suction impacts breast
• 3:12
  and bottle feeding with breastfeeding.
• 3:14
  The cleft palate makes it nearly impossible for the baby to efficiently
• 3:17
  express breast milk from the breast.
• 3:19
  Which can lead to weight gain concerns and dehydration.
• 3:22
  We would recommend that the family provide express breast milk via a
• 3:25
  specialty bottle, and we'll talk about more of those in a little bit.
• 3:29
  but part of the care through cleft team is also working with lactation if the family
• 3:33
  chooses to provide express breast milk.
• 3:35
  For bottle feedings, we have a variety of specialty feedings.
• 3:39
  They contain a specialty valve that accommodate for that lack of suction
• 3:43
  and allow the child or the baby to just munch on that nipple versus truly sucking
• 3:48
  and having those pressure differentials.
• 3:50
  And so we can talk, a lot more about that in detail, a little bit later too.
• 3:55
  Another thing to consider is that babies with an unrepaired cleft
• 3:59
  palate, may have some nasal loss.
• 4:01
  So you might notice a little bit of the milk or the formula
• 4:04
  leaking out of the nose.
• 4:05
  this can also happen with purees.
• 4:07
  sometimes these babies will vomit through their nose.
• 4:10
  And so that can be a little upsetting, but it's really not
• 4:13
  unexpected and shouldn't cause any, significant difficulties for them.
• 4:17
  Mike (Host): You know, Brenda, sticking with this same question real quick.
• 4:20
  I if a child has the cleft lip or palate correct it, does that mean the.
• 4:28
  Any motor development issues are also corrected, or do they
• 4:32
  still have to do some therapy?
• 4:35
  Brenda Fetter, MA: so typically these kiddos, um, these little babies and
• 4:38
  older children with repair cuffs.
• 4:40
  They will not have long-term impacts on their feeding skills.
• 4:43
  And so typically once those structural issues are corrected, they
• 4:47
  don't go on to have more issues.
• 4:48
  sometimes we may need dental help with like, occlusion for chewing if those
• 4:53
  teeth aren't lining up quite well.
• 4:54
  But usually these kiddos are amazing at adapting to the structures
• 4:59
  that they have at the moment.
• 5:00
  And so we don't typically see a huge need for kind of ongoing feeding therapy.
• 5:05
  Mike (Host): And so just for parents so they understand all this real quick,
• 5:09
  when you're dealing with a cleft lip or palate, we're really talking about a
• 5:14
  structural issue that can be corrected.
• 5:17
  It's not necessarily motor development nerves, that kind of stuff.
• 5:23
  Brenda Fetter, MA: Right.
• 5:23
  And Dr.
• 5:23
  Bergman, feel free to jump in as we're talking about this, but yes, from
• 5:27
  my standpoint, like they're not at increased risk for aspiration again,
• 5:30
  unless there's like an associated syndrome or more, kind of going on
• 5:33
  there from like a genetic standpoint.
• 5:35
  But really we do expect once we find the right bottle and the right system for
• 5:40
  these kiddos, they will hopefully thrive.
• 5:41
  I think that's the biggest takeaway is we may have some problem solving in the
• 5:45
  beginning, but they should thrive and fairly early on, even prior to repair.
• 5:50
  Mike (Host): Dr.
• 5:50
  Hannah, how does the timing of surgical repair influence the feeding strategies?
• 5:58
  Just kinda laid out by Brenda, And what should pediatricians know about
• 6:03
  the pre and post-op feeding care?
• 6:06
  Hannah Bergman, MD: Sure.
• 6:06
  So one thing that I would like to really stress here is that even though.
• 6:10
  Each of these babies may have a cleft lip or a cleft palate.
• 6:13
  each cleft is really different, And so we try to have sort of a broad guideline
• 6:18
  for when we want the lip And the palate repaired, but it really depends on how
• 6:22
  the baby is doing, how feeding is going, And what else is going on with the
• 6:25
  family or with the kiddos, health issues.
• 6:28
  so I would say there's plenty of wiggle room, but.
• 6:31
  Broadly, the cleft lip, depending on how severe it is, is usually repaired
• 6:36
  around three to six months of age.
• 6:38
  The lip itself, as Brenda mentioned, has really minimal impact on feeding,
• 6:42
  And so after surgery, we expect these kids to go right back to feeding,
• 6:46
  however they were feeding before.
• 6:48
  So breastfeeding or bottle feeding is totally fine.
• 6:51
  If it works, just go right back to it.
• 6:53
  Pretty much as soon as they're awake from anesthesia after surgery.
• 6:57
  The palate is a little bit of a different story.
• 6:59
  So Brenda talked too about how the palate is used for, generation
• 7:03
  of suction, but it's also used.
• 7:05
  To make specific speech sounds, we call them explosives.
• 7:08
  It sounds like PS and D's where you're trying to push air out the mouth.
• 7:12
  That seal that she was talking about also needs to form for those sounds.
• 7:17
  So we try to time the repair of the palate for when the baby is starting to babble.
• 7:22
  Typically, This is around a year of age, but a lot of the time we
• 7:25
  do see kiddos who are language delayed And so we delay the repair.
• 7:29
  Once they start trying to make those sounds, that's when we do the repair.
• 7:32
  very rarely if there is some sort of genetic difference or syndrome
• 7:36
  that makes it, impossible for the baby to develop speech at any point.
• 7:41
  We don't repair the palate and that's okay in those instances, but
• 7:45
  Those are very special instances.
• 7:47
  So typically repaired around a year of age.
• 7:49
  The postoperative, sort of protocol after a pallet repair is very different.
• 7:55
  And so, we will talk a little bit more about that later.
• 7:58
  but we have special sort of open mouth cups, non suction cups and
• 8:02
  no bottles or anything else in the mouth for a few weeks afterwards
• 8:06
  because it can damage the repair.
• 8:08
  Mike (Host): So let's talk about, what we really need to do.
• 8:10
  Parents, caregivers.
• 8:13
  when it comes to feeding before surgery.
• 8:15
  Now, Brenda, you went through a lot of safe feeding techniques.
• 8:19
  You talked about certain bottles, et cetera.
• 8:23
  Can you expand on that?
• 8:25
  Now that we're looking at managing, feeding before surgery, like can you go
• 8:31
  into some of the specific bottle systems, positioning strategies you recommend?
• 8:37
  Brenda Fetter, MA: that's a very good question and I would really like to
• 8:39
  focus more on the palette side of it.
• 8:41
  Like we've been mentioning cleft lip.
• 8:43
  In and of itself does not require any really special, um, feeding bottling
• 8:47
  systems or those types of things.
• 8:49
  It's the pellet itself.
• 8:50
  We need a bottle That is gonna compensate for that lack of suction.
• 8:55
  And so all the bottles that I'm gonna talk about, all have a specialty valve
• 8:59
  in them that essentially allow the baby to just kind of munch on that
• 9:03
  nipple versus needing to seal around the nipple, create the suction with the
• 9:07
  tongue And that closed system, One of our, go-to bottles, or the one that we
• 9:12
  probably use the most often is the Dr.
• 9:14
  Brown specialty feeder.
• 9:16
  Essentially, it looks exactly like a typical Dr.
• 9:19
  Brown bottle, which many of our families appreciate.
• 9:22
  But the big difference is, is there is a small blue disc that gets inserted
• 9:26
  into the nipple, And that kind of helps with that lack of suction and
• 9:30
  makes feedings much more efficient.
• 9:32
  This bottling system is great because, it has a wide variety of flow rates,
• 9:37
  so I can use all of the typical Dr.
• 9:39
  Brown nipples from an ultra preemie up to the fastest flowing y cut nipple
• 9:43
  without changing the nipple shape.
• 9:45
  it's available in a wide neck and a, a narrow, nipple shape.
• 9:49
  So again, it has a lot of flexibility and works really
• 9:52
  well, for most of our patient's.
• 9:55
  We also have a couple other's that we don't use as frequently, but there is
• 9:58
  like the Modela special needs feeder.
• 10:01
  people that have been practicing for a little while may know it as the haberman.
• 10:04
  It has two nipple options, kind of a standard and a mini, there's
• 10:07
  three flow rates that you just adjust depending on how it's, um,
• 10:10
  positioned in the infant's mouth.
• 10:12
  it can be useful for infants that have like a small oral cavity or maybe
• 10:16
  some other anatomical differences, but, it's definitely, a little bit,
• 10:20
  less adaptive than say like the Dr.
• 10:22
  Brown system.
• 10:23
  So we don't typically use it as frequently.
• 10:26
  there's also the pigeon nipple for cleft lip and pellets, and
• 10:29
  That is only one flow rate.
• 10:31
  It tends to be a very fast flowing nipple.
• 10:33
  so again, it has very specific uses, but we typically, our
• 10:37
  go-to is going to be that Dr.
• 10:39
  Brown specialty feeder.
• 10:41
  And then when we use that one, some of the things that we
• 10:44
  discuss with families is limiting feedings to 30 minutes or less.
• 10:48
  And This is great for kiddos and babies.
• 10:51
  Cleft.
• 10:51
  No cleft, it doesn't matter.
• 10:53
  We don't want them feeding for longer than 30 minutes.
• 10:56
  if that feeding extends beyond that time, they risk burning more calories,
• 11:00
  than they're taking in due to their elevated heart rate and respiratory rate.
• 11:04
  It's just a huge aerobic workout for them.
• 11:06
  So the more compact we can make those feedings, the better.
• 11:10
  we recommend feeding a baby with a cleft palate in a more upright position.
• 11:14
  we don't want them totally just straight upright, but definitely,
• 11:17
  pretty elevated just to minimize the amount of milk or formula that
• 11:20
  may be going into the baby's nose.
• 11:23
  We recommend frequent burping.
• 11:24
  These babies tend to take in more air when they're feeding, And so burping
• 11:28
  a little bit more frequently, often makes feedings more comfortable.
• 11:32
  And then feeding therapy is always an option.
• 11:35
  we can trial different bottles, different flow rates.
• 11:38
  We can help with strategies and other techniques.
• 11:40
  And obviously That is something that we offer through the Cleft Lip IMP
• 11:44
  Palate Clinic at Children's Mercy.
• 11:46
  but there's also options for like early intervention.
• 11:49
  Through birth to three tiny k infant toddler, kind of depending
• 11:52
  on what state the family lives in.
• 11:54
  we partner with community hospitals, as well, and local outpatient clinics
• 11:59
  because it is fairly specialized care.
• 12:01
  And so we wanna make sure that those local providers feel as comfortable
• 12:05
  as possible treating these patient's.
• 12:06
  And
• 12:07
  Leah Hunt, OTR/L: I can jump in because actually, these kiddos, they
• 12:11
  learn to eat foods too, while they still have their palate unrepaired.
• 12:15
  And so there's, some strategies for that too.
• 12:17
  So like Dr.
• 12:17
  Hannah said earlier.
• 12:19
  They get their pallet repaired and they need to be completely off of a bottle.
• 12:24
  They need to be able to drink from an open, free flowing cup, and eat soft
• 12:29
  solids to be able to meet their nutrition needs after their pallet repair.
• 12:33
  And so there are some little things about that, if you don't mind me jumping in.
• 12:38
  Mike (Host): No ple.
• 12:39
  Please go ahead cause one of the questions I wanted,
• 12:43
  you know,
• 12:45
  pediatrician.
• 12:46
  Perspective, you know, what are some of the signs that we should be looking
• 12:50
  out for, pre and post surgery that there may be some problems And so
• 12:56
  maybe can you touch on that a little
• 12:58
  bit as
• 12:58
  well?
• 12:58
  Leah Hunt, OTR/L: Yeah, absolutely.
• 13:01
  Like we've kind of talked about, we expect that in the bottling stage, once we
• 13:05
  figure out the appropriate flow rate and bottle system, that these kids are gaining
• 13:10
  weight and gaining good weight, and preparation for all of their surgeries.
• 13:14
  but then this transition period of being able to come off of a bottle
• 13:18
  and be able to eat, purees and a wide variety of soft table foods.
• 13:23
  drinking lots of their fluid from just an open, free flowing cup is a big.
• 13:28
  Transition.
• 13:29
  And so, we want pediatricians to know that they should be checking in on that.
• 13:34
  Be asking, how is your child doing with the transition to table foods?
• 13:38
  Are they able to drink from that cup that cleft palate clinic has been showing you?
• 13:42
  The biggest thing with those cups is they can't have any valves in them.
• 13:46
  They can't have spouts that would go into the mouth after surgery.
• 13:49
  so either just a completely open, free flowing cup or the cup, if it
• 13:53
  has a lid, it cannot have a spout or anything that would go into the mouth.
• 13:58
  So there's some, cups out there.
• 14:00
  B Box is probably one of the most common ones that our families
• 14:03
  use, reflow infra Trainer.
• 14:05
  but honestly, even sometimes, just like the old school Yeti Cup, that just
• 14:09
  has, you know, the open, free flowing lid, those work really well too.
• 14:14
  We have lots of different cups and strategies that we can use with kids.
• 14:18
  We will work with them in clinic, but then we kind of tell families, go home,
• 14:22
  try these things and reach back out to us if they're having any difficulties.
• 14:26
  And so really we, we wanna hear sooner rather than later because we
• 14:30
  wanna make sure that that kid isn't having to push back their palate
• 14:33
  surgery because they're having a hard time transitioning to foods or cups.
• 14:38
  Mike (Host): Dr.
• 14:38
  Hannah, there's a lot going on here.
• 14:40
  There's a lot of collaboration that obviously has to occur.
• 14:45
  You have therapists, surgeon, pediatricians.
• 14:48
  How can pediatricians best coordinate care?
• 14:53
  Hannah Bergman, MD: This is a great question because there are so many moving
• 14:56
  parts, And in our multidisciplinary clinic at Children's Mercy, we try
• 14:59
  to streamline things as much as we can while we have the families there.
• 15:03
  But then they go back into the world and they're, seeing their
• 15:05
  local pediatrician And so.
• 15:07
  This is a something that we're always working on and
• 15:10
  always striving to do better.
• 15:11
  but just basically we will see new babies, say it's, it was an undiagnosed cleft,
• 15:16
  if it's diagnosed on fetal ultrasound, we typically do meet those families ahead of
• 15:20
  time if we can in our fetal health visits.
• 15:22
  But if it's a new baby who is born with an unexpected cleft, of the lip or palate,
• 15:26
  if they are born at Children's Mercy, we will typically see them while they're
• 15:30
  inpatient before they go home just to touch base with the family and meet them.
• 15:34
  if they're delivered elsewhere, we try to touch base with them and see
• 15:37
  them in-person for a big team visit, within the first two weeks of life.
• 15:42
  People that are involved in, that first big team day are,
• 15:46
  ENT audiology, plastic surgery.
• 15:49
  Our whole feeding team, which includes Brenda and Leah and dieticians,
• 15:52
  nutritionists, occupational and feeding therapists and speech therapists as well.
• 15:56
  And then we also have clinical psychology and cleft orthodontics at.
• 16:00
  First, big, long initial visit.
• 16:03
  we haven't talked about the cleft orthodontics PC yet, but for our
• 16:06
  infants that have really wide cleft lips and cleft nasal differences, we
• 16:10
  will start things like lip taping.
• 16:12
  And we have a nasal clip that we, place to help with sort of.
• 16:15
  overall improvement in cosmetic outcome.
• 16:17
  So all of those things kind of happen at that first visit within
• 16:20
  the first week or two of life.
• 16:22
  So at that visit, usually we can identify any feeding
• 16:26
  difficulties that are existing.
• 16:28
  sometimes things, evolve and change over the first few, weeks of life.
• 16:31
  But if there's going to be a big problem, we usually know it.
• 16:34
  By that visit.
• 16:36
  So the most important thing that our community pediatrician partners can do
• 16:40
  is engage with the plans that we make with our feeding team for those babies
• 16:45
  and their families at that first visit.
• 16:47
  Very often we are trying to track down weekly or every
• 16:51
  other weekly weight checks.
• 16:53
  the typically.
• 16:54
  Are are usually done at the PCP office.
• 16:57
  And so, you know, making sure that these weights are happening on the same
• 17:00
  scale at the same office, kind of in the same situation is really important
• 17:04
  for making sure that we are able to accurately track how these kids are doing.
• 17:07
  my request would be, after these weight checks are happening, it would be awesome
• 17:11
  if our partners could have either a nurse or somebody from that office, from the PCP
• 17:16
  office or the pediatricians themselves.
• 17:17
  Share those updated weights with our clinic, And then if we're identifying
• 17:21
  something that needs to change, we can make that happen really quickly.
• 17:24
  So the best way to do that would be to call our cleft clinic
• 17:26
  administrator, Mikayla Falk, and her phone number is (816) 760-5829.
• 17:33
  And she will be able to use those weights, get them to the right
• 17:36
  people, And then our team can reach out if any changes need to be made.
• 17:39
  And it lets us identify any feeding challenges or, You know, weight loss
• 17:43
  early so that we can troubleshoot things.
• 17:45
  It may be, changing formula concentrations.
• 17:47
  It may be changing positioning and maybe switching to a different
• 17:50
  specialty feeding system.
• 17:52
  but it basically lets us figure out what's going on and get
• 17:55
  back on track as soon as we can.
• 17:57
  We want our kiddos to be.
• 17:59
  Gaining really, really beautifully and sort of on a normal trajectory
• 18:03
  before they undergo surgery.
• 18:04
  it's a big insult to the system And we expect a little weight
• 18:07
  loss around surgery time.
• 18:09
  So it's really nice to make sure that we're, we're got everything
• 18:11
  optimized before we could do surgery.
• 18:14
  Mike (Host): I gotta tell you, This is a lot of fantastic information
• 18:18
  and I want to thank all of you for coming on is there any one of you that
• 18:22
  just wants to, give the audience the listening audience a, a nice summary.
• 18:29
  Cleft lip palate feeding, that you think is really important that maybe we missed.
• 18:35
  Leah Hunt, OTR/L: we love these kids.
• 18:36
  We are very passionate about our babies who have clefting, and no family or
• 18:42
  pediatrician is ever bothering us.
• 18:44
  And so, This is a stressful process for any kid learning how to eat.
• 18:48
  And it's just a little bit more stressful when you have collecting.
• 18:51
  We are here, we are not annoyed when you call us or you ask
• 18:54
  us any of your questions.
• 18:56
  if you are having issues with weight gain, if you are having feedings that
• 18:59
  are lasting a long time, if you are coughing or choking or having any
• 19:03
  concerns, please reach out to us.
• 19:05
  The sooner the better because we are so happy to help And we would rather deal
• 19:09
  with it early on, then have issues, come up and delay surgeries down the line.
• 19:13
  Hannah Bergman, MD: One other thing I would say is that members of our
• 19:16
  team are really happy to come out to your clinic for in-person workshops
• 19:20
  on feeding tips and tricks or more specific information for your groups.
• 19:24
  we can set that up really, really easily if you just call that coordinator.
• 19:28
  we would be happy to do it.
• 19:29
  And, there is a lot of sort of support groups and things on social
• 19:33
  media for families that exist outside of the Children's Mercy, sphere.
• 19:37
  there's varying degrees of accuracy And that information that's shared And
• 19:40
  that can be really, really important for families that are looking to
• 19:43
  connect with other's who are going through a similar cleft journey.
• 19:46
  for either practitioners.
• 19:47
  Or families who are looking for resources that are more evidence-based.
• 19:50
  if you're looking outside of the Children's Mercy resources, we would
• 19:53
  recommend, going through the American Cleft Palate c Craniofacial Association
• 19:57
  or the a CPA a at a CPAP cares.org,
• 20:00
  they have a lot of info on their website for both healthcare providers
• 20:03
  wanting to learn more about cleft And it's multidisciplinary management.
• 20:06
  And for families who are just looking for resources that are
• 20:08
  made specifically for them.
• 20:10
  So I would definitely recommend checking them out if you're looking for more info.
• 20:13
  Mike (Host): great stuff.
• 20:15
  Please continue to do what you're doing 'cause I know it's making a huge.
• 20:19
  Impact.
• 20:20
  For more information, go to c MKC link slash CME podcast.
• 20:27
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• 20:31
  For topics of interest to you, This is Pediatrics and Practice a CME podcast.
• 20:37
  I'm Dr.
• 20:38
  Mike.
• 20:39
  Thanks for listening.