Problem-Solving with Catherine: Complex Infant Post-HIE


I have a baby who was born around 38 weeks GA, now about 3 weeks old (I can confirm when I’m at work tomorrow if needed). Attempted vaginal delivery, but baby began having HR decels. Emergent C-section, mother’s uterus ruptured, and infant was free floating in the abdominal cavity. Coded at 10 min life, resuscitated. Whole body hypothermia protocol for 3 days, then re-warmed. Inconsistent gag reflex, poor secretion management (although improved significantly), no rooting reflex, no sucking reflex. Now on RA. With the exception of improved secretion management and stability on RA, there has been no improvement. Received G-tube yesterday. Likely will go home later this week.

Parents are amazing and I’m wanting to give them everything I can. I’m putting together a packet of information on including tube fed children in family meals and preventing oral aversion, things like that.

I’m just looking for any good handouts or information anyone may have that I can use. He’ll be set up with outpatient, but the family will do anything that may help at all.

This is the first baby I’ve worked with that has had absent rooting and sucking, so I feel stuck on how to treat.

Catherine’s Answer: 

In my experience, sounds like moderate-severe HIE given the impact on oral-pharyngeal reflexes. What did MRI Brain show? That is essential to our differential. What does OT say about postural tone and movement since it is a base for oral-motor control? Likely diffuse postural hypotonia but may be starting to show some atypical movement patterns and an abnormal increase in tone, depending on MRI. In the setting of neurologic co-morbidities as devastating as this appears to be, the diminished pharyngeal responses (i.e., inconsistent gag response) reflects pathology. Would suspect that if pharyngeal responses are inconsistent, there is a co-occurring impact on pharyngeal constriction, and saliva swallows are impaired to some extent. Remember that the suck, swallow, and pharyngeal responses are underpinned by cranial nerves with overlapping function —so most often, the suck, swallow and pharyngeal are impacted to a similar extent. There is a good chance he is aspirating his saliva silently, as he may lack the sensory registration and motor responses to elicit a timely and effective cough. Sounds like you been seeing the infant in the NICU, and he is being discharged to EI/home? These infants with this level of neurologic insult are so sad and are so complex. I remember the first one I was consulted on way back in the early 90s – we did not call it HIE back then but that is what it was. Despite 10 years in EI at that time with complex infants, no one knew how to help these infants that started to survive a difficult perinatal course. That is one of the reasons that I later developed my NICU Swallowing and Feeding and After Discharge seminar, and my Advanced Infant/Pediatric Dysphagia seminar —-to share my discoveries and support clinical problem-solving of our complex patients, across the age span. The aberrant oral-pharyngeal reflexes and facilitating the sensory-motor components that will support eventual function become the focus both in NICU and EI. For parents right now, it’s all about providing motor learning during their interactions —provide infant with good postural support and midline stability with UE/hip/knee flexion, chin tilting down, via very very secure swaddle; elevated sidelying cradle turned toward caregiver with hands supported near face; facilitate rooting response on own hands and via mother’s finger using deep pressure (not expecting him to respond but focusing on providing input for the brain); firm deep pressure to blade of tongue in rhythmical one per second pattern to provide motor learning for future sucking (using his own fist, mother’s finger, firm pacifier). Lots that we can then offer as therapists via NDT, sensory-motor learning, oral-sensory interventions for developing underpinnings for rooting, non-nutritive sucking, effective saliva swallows and state regulation. These babies are complex and teach us so much! Hope this gives you a place to start. I look forward to seeing you at one of my seminars, where I can expand on these interventions.


Shaker Seminars: Learning and Renewal …. Miami Style …

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The Feeding and Swallowing Team at Baptist Health in Miami, Florida were amazing hosts! And what a backdrop for learning and a relaxing renewal of our spirits. Speech-Language Pathologists and Occupational Therapists joined us from across the US to learn interactively along with each other, focusing on a wide variety of practice settings, problem-solving our neonatal through school aged patients.  In the NICU Swallowing and Feeding Seminar we enjoyed higher level conversations about complex feeding challenges in the NICU and after discharge, considering impact of co-morbidities, and problem-solving next steps. We were blessed to have a pediatrician join us! She thoughtfully offered her insights that informed everyone’s practice and supported our navigating those sometimes-difficult discussions with the team. In the Pediatric Swallow Studies seminar, we considered the unique components of the swallow pathway across the pediatric age span, through videos and stills, and then how to peel apart the pathophysiology and its implications for both function and for treatment.  Both seminars gave us opportunities for conversations, in the group discussions and informally at breaks, to share the same struggles, and our solutions. It was exciting to discuss the impact of the latest research and meld that with our collective clinical wisdom. We all walked away feeling renewed, remembering that we are all in this together, and we are all always learning.

I am looking forward to learning along with many of you in Indy in July!

Catherine Shaker’s Indy Seminars: Take Your Practice to the Next Level!

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I’ll be in Indy in July for three advanced learning opportunities! Designed to build not just your information base but also your critical thinking for complex neonatal and pediatric patients.

  • Pediatric Swallowing and Feeding: The Essentials July 19-20
  • Neonatal/Pediatric Videoswallow Studies July 21
  • NICU Swallowing and Feeding: In the Nursery and Early intervention July 22-23

I bring my passion for feeding and swallowing to every course I teach, and I remember what it was like 45 years ago to be starting out but not know where to start. Our discussions will include critical thinking for all our patients, no matter the age or co-morbidities. It’s not just learning “what to do” clinically but also the critical thinking about “why”. We’ll take a deep dive across multiple components of assessment, intervention, and co-morbidities—because you will likely see many of them across your career— often in a complex combination that will require thoughtful problem-solving to peel apart.

I designed my Pediatric Swallowing and Feeding: The Essentials course to provide a solid foundation in typical development (our template for therapy), atypical development, oral-motor, sensory, sensory-motor, development of the swallow from birth on, tools of the trade, tubes, trachs, preemies, TOTs, airway, swallow studies, weaning tubes, a wide variety of interventions and the “why” behind them —to support your problem solving. I weave in the research to help you, resources to take away and integrate multiple levels of learning to build critical thinking. In the NICU Seminar, hear about the latest research and interventions, assessing and treating complex sick newborns and preterms with swallowing feeding challenges, trachs, tubes, readiness for PO, and post-CPAP/HFNC. Finally hear about how to treat those complex babies in the NICU and in an EI caseload discharged to you from the NICU! In the Video Swallow Studies Seminar, focus on the entire swallow pathway and its potential for compensations and maladaptations in relation to co-morbidities, from birth on. Looking at the evidence-base, the big picture, and use of critical reflective thinking. Apply key info to treating your patients in therapy — even if you don’t actually “do” swallow studies!

I hope you can join us!




Problem-Solving with Catherine: Former Late Preterm with Stridor

What Is Colic? Causes, Remedies and Symptoms of Colic in Babies


Problem solving question with a kiddo with reflux. Previous 35w5d baby spent 24 hours in the NICU for low blood sugars and high bilirubin and low body temp. He needed to be on a warmer for 2 hours. He did not need lights or other intervention other than feeding for blood sugars and bilirubin.

Feeding difficulties from the beginning but progressively worsening reflux that correlated with stridor. His last MBSS showed better coordination with thins and less prespill to valleculae and pyriforms on Avent anti colic with level 2 nipple compared to slightly thick on level 3. Increasing prespill to valleculae and pyriforms with 2 episodes of penetration above the cords with slightly thick. Recommendation for reflux is usually thickening feeds but his OP swallow wasn’t as coordinated on thickened feeds. How can we manage reflux and not have poor OP swallow function? He has an appointment with an aerodigestive clinic but was hoping to implement something sooner as he is very uncomfortable and colicky.


Catherine’s Answer:

Sounds like he was a late preterm. I have lots of questions to help me understand what the relevant factors might be.

What is the PMA (adjusted age) now? When was he discharged from the NICU? How long has he been with you in OP? Are there any other diagnoses/co-morbidities we know about so far?

How is weight gain and stooling?

When is the aerodigestive workup?

Was reflux a presumptive diagnosis or based on objective data? Is he being treated pharmacologically or non-pharmacologically for reflux?

Was there stridor only at rest? Or also with PO?

How do we know the stridor is provoked by reflux? It could be, in an attempt to close the airway to “stop” the refluxate from entering, or it could be an inspiratory stridor associated with co-occurring airway invasion, or it could be due to problems with structural integrity of the larynx, or a combination of each of these.

Did he have a scope by ENT at the bedside to determine etiology for stridor? Without that, we are guessing about the “why”. It could provide excellent data re whether EER/LPR is the reason for stridor and/or airway lack of integrity. Reflux could also be adversely affecting laryngeal sensation and further compromising swallowing safety. But we cannot guess at that and then formulate a plan for optimizing safe feeding.

Was the study during NICU stay or after discharge? Your calling it an “OP swallow” suggest it was after d/c from NICU..? What was the feeding plan at discharge home? i.e., no PO, PO with NGT backup or? When was that swallow study (i.e., how long ago?)

During the VFSS: Was there pacing offered? Avent nipples tend to run fast and could be increasing aerophagia (exacerbating reflux)..? It would likely be too fast a flow with thin to use a level 2 – that increased flow rate may have predisposed such a young infant to mis-direct the bolus. Did they then try a slower flow rate such as a Dr. Brown’s preemie or ultra preemie – we often use those with preterms to optimize swallowing safety. Thickening only as last resort after those nipple options trialed if indicated.

Normal NB infant swallowing physiology is to actively drive the bolus into valleculae,  but the premature entry to the pyriforms is not a normal variant and suggests a delay in swallow initiation – the question is why – and could be figured out by seeing the swallow study. Could be there was reflux in or coming up the esophageal body and neural messaging “told the infant” to “pause the bolus” and maladaptation occurred (laryngeal penetration). Could be there was increased WOB, typical of  late preterm, and that caused swallow-breathe incoordination that lead to LP. Could be that there are airway problems causing the stridor (especially if it is heard at non-feeding times) that alters timing of the swallow -breathe interface.

What was used to thicken? Rice? Oats? The increase in loss of bolus control is likely related to the higher flow rate nipple, one would think or if the thickener was not binding or mixed well..? or was EBM? Were the LPs shallow/midway to the vocal cords or deep to the level of the cords? In either case, the LPs are worrisome given the bigger picture, but especially if they were to the level of the true vocal cords (deep).

That suggest that there is a very high risk of events of silent and/or symptomatic aspiration during the course of a true feeding based on research findings and my experience as well.

Does the infant have a means of alternate or augmentative nutrition, or all PO? PO feeding without the aerodigestive data seems risky, both based on “precarious”/limited data from the VFSS, limited information about impact of interventions and etiology for swallowing pathophysiology, unclear etiology(ies) for the stridor and potential for airway invasion. His apparent discomfort and colicky behavior could be response to airway invasion, and not reflux.

Look forward to further information to help us problem-solve.


Problem-Solving with Catherine: 2.5-year-old with DiGeorge Syndrome


DiGeorge Syndrome/VCFS/22q deletion: My Landon's Story. Awesome read ...


I have a 2.5-year-old preschooler with DiGeorge syndrome. He spent the first few days of his life on a respirator and when he was able to come off of the respirator and drink from a bottle, he would throw everything up. They put in a PEG due to aspirations and he was put on steroids to help with vomiting. Now, he is able to eat all textures of liquids and solids without aspirating but he refuses to put anything in his mouth (he is probably traumatized from his eating difficulties). I have been working with him for a year on having positive experiences with food and educating the parents about reducing the pressure for him to eat while still showing him positive experiences with food. He has made very little progress and recently started putting his fingers in his mouth to make himself vomit after every meal. Does anyone have any recommendations of what I can do to help this little guy?


Catherine’s Answer:

I am assuming the data about “able to eat all textures without aspirating” is from a recent swallow study? Was there any information about what they saw regarding his swallowing physiology to “round out” the impression from the VFSS? While they may not have witnessed aspiration during the study, his swallowing physiology may indeed predispose him to airway invasion. I ask because it is unlikely that the typical sequelae from a DiGeorge diagnosis have all resolved (e.g., oral-motor, craniofacial, cognitive, sensory, sensory-motor, respiratory for example). The data that they did not witness aspiration during the swallow study is likely just one piece of the puzzle. Is he followed by OT and PT? Is GI following? Go back to the drawing board and take a second look at him –his clinical presentation — separate from what you know about his “not aspirating” from the swallow study, and see what pieces stand out as problematic for GI comfort, prerequisites for PO, possibly learned behavior, and what questions you want to ponder as you consider next steps. These little people with DiGeorge are so complex, and changes will be slow, challenges with feeding are often enduring. Even with being off the vent and on RA now, he may still have some breathing/airway/coordination issues with solids and liquids that continue and are roadblocks, both related to co-morbidities and also related to learned behavior. Good that you are helping the parents pump the breaks on PO. They may view him as ready to eat and they likely don’t realize there is so much more required than just “not aspirating” during the VFSS to allow safe and successful PO, given his bigger picture.



Problem-Solving with Catherine: Complex One-Year-Old Post VFSS


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I have a question/need help please! A patient recently was added to my caseload. Another SLP at a different facility completed his MBSS and notes no aspiration but flash penetration with all liquid consistencies.  The family was recommended to thicken liquids to nectar thick with oatmeal, and for us to trial weaning from NTL. My facility is not familiar with IDDSI recommendations or thickening with oatmeal.

Is anyone familiar with thickening with oatmeal, and if so, what guidelines do you use for measurement? (What’s the ratio for thickening with oatmeal?)

Also, the patient just turned one year old. He presents with lingual and labial restrictions and consistent open mouth posture. Parents were told by an ENT his mouth is “perfect” so despite my recommendations for a second opinion, they refuse to. They also refuse e-stim therapy to help target pharyngeal phase deficits.

The SLP who completed his MBSS also recommended they go down to a Dr. Browns Level 1 nipple for thin liquids. We have been working on oral phase deficits; however, I feel we are at a plateau due to things behind my control (anatomy). Any recommendations on how to proceed?


Catherine’s Answer:

Missing info both about history, co-morbidities, and specifics from VFSS which makes it hard to problem solve. Without that data we might just be guessing and selecting interventions that don’t align, might be unsafe or contraindicated. You might not have been given that info but it is key to problem solving—- All we know is there was flash penetration and no aspiration —that doesn’t help much because we are missing information about physiology/pathophysiology —but you mentioned “oral and pharyngeal phase deficits “ in passing — the open mouth posture and other issues may be related to nasal airway patency, hypotonia, poor postural control, global impacts of TOTs, and multiple other factors that may be identified through his history and clinical presentation. That he did not aspirate doesn’t mean his swallowing physiology isn’t precarious —in the setting of his co morbidities (which we don’t fully understand). Recent research at Boston Childrens suggests laryngeal penetrations in the setting of co-morbidities are not necessarily benign — meaning they may benefit from interventions. Not necessarily thickening but even change in utensil or rate of drinking to avert the penetrations. All that should be problem solved during the VFSS including best way to avert penetrations and improve the dynamic swallow. And thickening is a last resort, so we hope other interventions were trialed and objectified. If thickening was the only option left, objectifying the best way to do that while under fluoroscopy is essential. Because clinically we would be guessing at what “works” since we can’t objectify impact of the possible interventions. And that is why starting a weaning of the thickened liquids isn’t the first or next consideration in managing this patient. Too many missing and moving parts. Sorry I don’t have suggestions yet —my mind is moving out of necessity to lots of questions to help me then consider potential solutions. Pause and look again at what pieces are missing, gather that data, consider that based on history and comorbidities, and clinical behaviors.


Catherine Shaker Seminars: Elevate Your Infant Feeding Practice

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Join Catherine Shaker to take your infant feeding practice to the next level. Whether you are in the NICU or in Early Intervention, key information you can use right away with infants on your caseload. Indy in July and Baltimore in August

  • NICU Swallowing and Feeding: In the Nursery and Early Intervention July 22-23
  • Neonatal/Pediatric Video Swallow Studies July 21
  • The Early Feeding Skills Assessment Tool: A Guide to Cue-based Feeding in the NICU: August 29-30

In the NICU Seminar and Early Intervention, critical thinking and problem-solving based on real life infant clinical experience over 45 years. Latest research. Assessing and treating complex sick newborns and preterms with swallowing feeding challenges, trachs, tubes in the NICU. Foundations for supporting the complex infants discharged to you in EI from the NICU. In the Video Swallow Studies Seminar, focus on the entire swallow pathway and its potential for compensations and maladaptations in relation to co-morbidities, from birth on. Looking at the evidence-base, the big picture, and use of critical reflective thinking, not a cookbook approach; even if you don’t “do swallow studies” increase your understanding and be more skilled at referrals. In the Cue Based seminar, Dr Suzanne Thoyre and I do a deep dive into infant-guided cue-based feeding, the evidence-base, complex feeding challenges in the NICU and after discharge in EI. Analyze and score videos of infants feeding and problem-solve next steps.



Problem-Solving with Catherine: 15-month-old with TOTs and Difficulty Chewing

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What am I missing? 15m old, chewing crunchy things, meats and starches (muffins, toast, fruit breads) and swallowing without difficulty. Drinking juice (not water) from a straw. Eating dried fruits and snap pea crisps well. But fresh fruits and veggies, we are making almost no progress. Will put most trials in his mouth, chew then push out, then refuse further attempts. Likes yogurt but refuses all other purees. No trouble with getting hands messy. GI had no concerns, did an MBS with no notable findings. Frenectomy recommended by ped dentist to be done soon.

Catherine’s Answer:

Is he otherwise normally developing without any feeding history that sounds worrisome? What is his overall sensory system like? Any history of reflux? I wonder about the swallow study results and data that was obtained. While there apparently was no witnessed aspiration, did they describe swallowing physiology in the findings? That data can provide more information about muscular synergies and the multiple components that underpin chewing that might be problematic. It is not uncommon for swallowing physiology to be altered in the setting of tethered oral tissues, but there may be other findings from the swallow study that could shed light on the “bigger picture”.  The ability to recruit full ROM for chewing a full variety of foods may be sensory-based, motor-based, and/or due to the impact of the altered ROM of the check/lip/lingual muscles due to tethering, and/or a combination of any of these. Take a careful re-look at oral-motor control and preferential foods/liquids to help you peel apart what might be the “why”. The sensory “load” from the foods that child is successful with, and the bolus control required, and also the co-occurring muscular requirements for posterior bolus formation and full ROM for BOT retraction, are key considerations. It’s complex, so pause to sort it out and figure out the “what else” that might be impacting what you are seeing. The apparent need for a release is clearly a factor in your differential, but like a “detective,” now focus on if there is anything else that underpins function that might be aberrant. It may be that the release planned will not in and of itself promote normal eating patterns; I suspect that is unlikely. Whether there is perhaps also learned maladaptive oral-motor behavior and other reasons for his preferences will need to be sorted out and treated to support optimal feeding outcomes.




Catherine Shaker Seminars 2023: Real World Learning

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Join me for multiple advanced clinical learning opportunities! Clinically relevant, rooted in evidence-based practice and critical thinking. Immediately applicable. Enjoy a welcoming environment that fosters interaction and learning along with each other. Remaining 2023 locations:  Indianapolis (July), Baltimore (August/September), Yonkers NY (September), and Boston (October). This will change your practice.

  • Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and Practice Issues
  • NICU Swallowing and Feeding: In the Nursery and After Discharge in EI
  • Pediatric Swallowing and Feeding: The Essentials
  • Pediatric Video Swallow Studies: From Physiology to Analysis
  • The Early Feeding Skills Assessment Tool: A Guide to Cue based Feeding in the NICU and 

Our discussions will include critical thinking for all our patients, no matter the age. It’s not just learning “what to do ” clinically but the weaving in of compassionate family-centered care, which must go hand in hand with the clinical expertise we bring. So that every feeding experience matters. It is, as one of neonatologist mentors told me years ago, all about finding the balance between the art and science of what we do. The communication from the infant, the child, and the family must always be the lense through which we problem-solve and intervene. Each of us has had a moment when we really “listened”, and it changed our practice forever. Mine was in 1985, with a wonderful mother of a critically ill preterm infant, and it has stayed in my heart. This relationship-based nature of our work, and its potential to influence lives in so many ways, must remain as much a part of our day-to-day interactions with families, always inextricably linked our problem-solving.

Problem-Solving with Catherine: Where to Begin with Former Preemie with Multiple Complex Co-Morbidities

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I’m looking for some insight on where to begin with this case:
The child’s age is 4 Months (Preemie Baby – 35 Weeks, will be 5 months soon). Aspiration pneumonia, G-Tube and Nissen Fundoplication, nothing by mouth.
Issues with swallowing – risk of saliva entering to lungs – can’t give him pacifier, reflux, and unknown genetic abnormality/corpus callosum. Any help would be appreciated!

Catherine’s Answer:

Sounds like he is a late preterm who is going to be 5 months soon and would then be not quite 4 months adjusted age.​ The neurologic co-morbidities (absent corpus callosum) suggest at least part of the etiology for the abnormal swallowing and that often results in altered oral-pharyngeal reflexes that underpin feeding. There may be other components of his history that might further inform a differential to guide a plan of care. I would suspect there might have been a VFSS early on in the NICU unless he was so neurologically devastated that the team determined a VFSS would not change his management and proceeded with a G-Tube/Nissen; or if he did not swallow his saliva, we would likely not do a VFSS. High risk for altered postural control so will benefit from neurodevelopmental treatment to facilitated base for supporting motor learning. Oral-sensory-motor intervention will be key to support learning to swallow saliva; this often involves using a pacifier as one component. When cautiously and thoughtfully utilized, it can help facilitate the intrinsic tongue control for swallowing saliva and oral-motor organization.

To start problem-solving, it will be helpful for me to understand what you see clinically, especially related to postural and oral-pharyngeal tone, oral-pharyngeal reflexes, interest in own hands to face/ mouth, need for suctioning and response to suctioning, any spontaneous swallows observed, any ENT consult results.

Very challenging patient with multiple complex issues that are likely to be enduring and progress likely to be slow.

I hope this is helpful.

Problem-Solving with Catherine: Repeat Swallow Studies

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How often are swallow studies typically repeated? Yearly or just when there is a status change until not needed?

Catherine’s Answer:

Since our goal is to minimize radiation, especially with infants, it’s key to look closely at the risk-benefit ratio of a repeat study. Most often that means: if there is decline in swallow function despite following recommendations from most recent study; if there is a change in patient status (illness, new co morbidity, regression in overall skills, consideration of G-Tube removal or decannulation for example); if the results from the most recent study were tenuous or based on limited or inconsistent data, or the SLP lacked confidence in the results; if there were technical problems ( unable to record so review of physiology not possible leaving results less assuring) for example. When we lock ourselves into an arbitrary number of weeks or months for a repeat study, then our clinical thinking can become arbitrary and generic instead of based on that patient’s unique history, co morbidities and clinical impression as to how fragile swallowing physiology is — even with interventions. Especially when we consider that child’s feeding environment (need for modifications, parent follow through and fragility of medical status, for example). The decision about timing for each child will be unique. It’s a good reminder about avoiding arbitrary points in time for anything in our clinical planning/practice. Your unique patient is always the guide.


Problem-Solving with Catherine: School-aged Child with MD

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Looking for suggestions. What (if anything) would be safest to offer a Kindergarten student with Muscular Dystrophy that has ongoing respiratory concerns (and is frequently absent as a result), currently maintains all nutrition via G-tube due to some choking episodes when fed at home and is seated behind a shield with his nurse and instructional assistant on either side. Family is insistent on having him engage in an oral experience during lunch with his peers and is suggesting a Tootsie pop which should be taken away before he gets to the candy which I am not comfortable with at all. There are no doctor’s orders on file, and we cannot demand them. Any ideas or discussion would be greatly appreciated.

Catherine’s Answer:

I would not offer anything PO, based on both child’s diagnosis and the history we know of, without an instrumental assessment of swallowing physiology and subsequent physician orders. I would be documenting that in the child’s record as my current recommendation based on information currently available, with a documented phone call to the MD, and the MD’s direction. And I’d pull in administration/my leader from the start. The risk appears quite high for airway invasion from what we know, which is limited but well presented. Although the parents want the child fed, I would not proceed. The risk for you is worrisome. As an expert witness in previous similar cases where there was an unintended adverse event, I would otherwise be concerned about potential liability for you. It can happen, unfortunately.


Problem-Solving with Catherine: NICU Infant with NAS/NOW and Cleft Palate

Cleft Palate & Cleft Lip in Babies: Signs, Causes & Treatment

Question: I have a patient in our NICU with a left sided cleft palate and lip. The patient developed ulcers on the exposed palatal shelf, which are suspected to be due to “mechanical trauma” from feeding. We we’re initially using Dr. Browns specialty valve bottle. We switched to the Haberman bottle to see if this improved the situation, but they did not heal and seem to become more irritated as he feeds more.  We have now stopped feeding and plan to re-assess once the sores have healed. The patient has shown ability to safely feed with both the bottle systems we’ve used thus far and loves to eat!

I am being asked if there is a different bottle system that may prevent “friction” against the palate. I’m not sure a different bottle system would make a difference but have never come across this situation before. I’m having trouble finding any research regarding feeding-related ulcers in cleft palate cases. Dermatology has been consulted and agrees it is likely feeding related. Have you come across this before or have any suggestions that may prevent further irritation of these areas??

Catherine’s Answer: I too have seen this unfortunately, though it is not a common co-existing issue for most infants I have followed with a cleft palate (both in the newborn Nursery and in the NICU). My initial thought is that it is uncommon for an isolated cleft in an infant admitted to NICU to delay discharge by a month; if there is an isolated cleft, most infants with proper support become full PO feeders within about 48 hours, in my experience.  It makes sense as I then read your follow-up info, that the co-occurring co-morbidity of what sounds like NAS/NOW may be further complicating the provocation and persistence of the ulcers. Is the infant preterm as well?

Things I am thinking about. Both prematurity and h/o NAS/NOW with sequelae, potential other co-morbidities, and how the infant is being fed could all be factors.

Optimal motor learning in utero is adversely affected by preterm birth, regardless of the cleft. That makes the infant’s adaptability to the nuances of sucking and feeding more precarious. If there is any increased WOB relating to prematurity, that may interfere with a functional sucking pattern (adaptive behavior to stop flow to allow for a breath). State dysregulation, if present, may predispose a well-intentioned caregiver to “passively assist” or prod the infant with could create further friction.

Also, the infant’s oral-motor integrity that underpins sucking may be altered due to a tongue which lacks good midline stability for stripping; this is not uncommon in the setting of cleft palate. It may be due to lack of motor learning in utero. In utero, there is the likelihood that the tongue “stabilized in the clefted space” instead of the typical intrauterine tongue-palate contact that builds midline stability during sucking and swallowing of amniotic fluid. Does that make sense? For the typical fetus, that motor learning is why feeding emerges apparently effortlessly in the typical newborn. The presence of the cleft in utero creates an altered sensory-motor plan that then impacts function.

This would then potentially lead to a loose and disorganized latch and seal of the tongue on the nipple. If the caregiver doesn’t actively stabilize the nipple in midline (which best supports effective compression for fluid transfer), there can be friction created by repeated attempts of the tongue to latch. As Lauren suggested, stabilizing the nipple in midline can help the infant organize and achieve a stable latch that recues friction. I have heard some bedside caregivers suggest putting the nipple in the clefted area during sucking; assuring this isn’t happening will avoid some undue friction, as well promote more normal oral-motor patterns.

I would also suspect that a co-morbidity of NAS/NOW could further predispose the infant to disorganized sucking pattern that creates more friction due to less stable lingual contact with nipple. State neuro-dysregulation common in infants with NAS/NOW may provoke disorganization that further complicates potential for friction.

If there are co-occurring co-morbidities structures (mandibular hypoplasia, tethered oral tissues) that can also affect lingual patterns at rest and with function. Unclear if this is a concern with this infant.

Multiple potential factors to consider. Depending on the “why” that you determine applies to this unique infant, possible interventions might include: introduce post-feeding oral cares that maintain mucosa for future repairs and minimize dryness (our maxillofacial surgeon asks caregivers to sweep the intraoral structures with EBM or sterile water to clean off any formula and optimize tissue hydration for ease of future suturing). Stay with one feeding system for motor learning (Dr Brown’s best allows infant-guided feeding as it cannot be squeezed by well-intentioned caregivers). Continue to work closely with nursing and family via guided participation (during some PO feedings for one-to-one learning) re: stabilizing nipple in midline and why, avoiding prodding, using infant guide rooting response to help infant optimize tongue placement at the start, provide required swaddling and stability and vestibular/tactile input that promotes state regulation, discuss benefits of lanolin-based cream with pediatric dermatologist who is following and neonatologist, honor infant’s disengagement.

This can be challenging, as many caregivers have their own approaches that may not be optimal for this unique infant. Maybe a neo or APRN can work with you, and you can be present at rounds for a few consecutive days, and have a few key nurses on each shift that “get it” and perhaps become the infant’s primary nursing team to support continuity of care and partnering with ST.

I hope this is helpful. Good he has you in his corner.


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Intellectual curiosity is known as one of the hallmarks of a lifelong learner.  The intellectually curious person has a deep and persistent desire to know and asks and seeks answers to the “why” questions. And doesn’t stop asking at a surface level, but instead asks probing questions in order to peel back layers of explanation to take a deep dive …..and that changes everything.

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Problem-Solving with Catherine: “What Else” to Consider in a Differential

Pegalis Erickson Medical


My friend was induced at 37 weeks due to concerns for gestational HTN. She had a maternal fever and leukocytosis during labor and received ampicillin. She had a vaginal birth with baby’s initial APGAR of 6 followed by 8 and 9. After birth, her baby received phototherapy for ~8 hours for jaundice and was then discharged shortly after.

Pediatrician at follow up appointment noted a “squeaky” cry and diagnosed him with laryngomalacia as well as an anterior tongue tie. He had a frenectomy done at 1 week by ENT. ENT also noted a lip tie and recommended re-assessment in 1 month.

He exhibits a “low tongue posture” and sometimes an open mouth posture when sleeping. He is gaining weight but has difficulty with establishing and maintaining latch, especially on left breast. He tends to use a “biting” pattern rather than a sucking pattern, which seems to be impacting efficiency with intake. My friend has been using cross cradle and football positions to optimize latch. He has been unable to latch in laid back position. Stridor? (“squeaking” noises) during breast feeding on the left breast > right. Baby is also exhibiting occasional episodes of apnea when coughing on secretions and is coughing with burping intermittently, which pediatrician attributed to GERD. Frequent gas and spit up. Poor sleeping during the day unless on parent’s chest of in semi reclined position. He is currently 3 weeks, 3 days old.

Her questions are:

  1. How can she help him improve his latch, especially on the left?
  2. How can she help him to reduce stridor (“squeaking” noise) during feeding, especially on the left?
  3. Are there any exercises to help him improve lingual strength and tongue to palate elevation?
  4. Any tips on reflux management without using medications?


Catherine’s Answer:

His early medical history sounds fairly unremarkable with the exception of the “squeaky voice. I find pediatricians not uncommonly “diagnose” laryngomalacia when they hear “stridor” but there can be many etiologies for stridulous voice in an infant, and its presentation (e.g., heard only during feeding, vs. heard also at rest). It is true as the pediatrician stated that the stridor may also be a by-product of responsive protective closure to EER/LPR events.

Did ENT scope the infant, and did he/she then diagnose the infant with laryngomalacia? Did ENT report seeing any erythema or suggestion of reddening of the larynx (which may suggest ongoing EER/LPR?) If so, not uncommon then for ENT to recommend some meds. Meds have been reported to reduce inflammation and irritation to tissues and restore laryngeal sensation, in some infants. I suspect ENT did not see evidence of EER/LPR, because you mentioned only the TOTs. Did the ENT clip to release the tongue tie or laser? Laser tends to have a better result. Wonder if the “low tongue posture” may be a posterior tongue tie that was missed? Or may have other etiology. The clinical behaviors you report are c/w sequelae from a posterior tongue tie as one possible etiology. The limited ROM of the upper lip (due to tethering) can also impact the entire oral-motor and hyo-laryngeal muscular network that underpins feeding/swallowing, and create the challenges being observed. Research and clinical observation have suggested a correlation between posterior tongue tie and EER/LPR (air is ingested with each suck-swallow d/t an ineffective seal with the nipple); this can be recruited at breast or bottle.

Tethered oral tissues can often co-occur with mandibular hypoplasia, and in such circumstances, if the tethering is released, it can provoke glossoptosis and airway obstruction. This reinforces the importance of always focusing on the bigger picture perspective, using thoughtful reflection and not signal reacting to a single finding, without considering the context, when we complete a differential.

What to do is not fully clear due to multiple pieces that seem to be contributing our differential (TOTs, EER/LPR, potential influence of airway/laryngeal integrity, possible mandibular hypoplasia). A clinical swallowing and feeding evaluation by a pediatric SLP with experience with complex infants is the place to start. With clinical observations there will be more questions and paths to discovery of what to do.

I hesitate to suggest strategies without understanding what is causing what, as it like shooting in the dark. The stridor may resolve with management of EER/LPR, once we understand its etiology. Ineffective tongue-palate seal and air swallowing may be reduced by release of a posterior tongue tie. There may not be a clear indication of need for lingual strengthening base on what we know so far, but there may, pending the SLP assessment. The “whys” behind each of the concerns so thoughtfully articulated need to be peeled apart to find the “what to do/interventions” that best meet this infant’s needs without a generic response about interventions “to try”. In the interim I’d be happy to talk with your friend about some possible interval inventions that might ease the feeding process. She’s lucky to have you in her corner.

For infants presenting like our little one above, my IBCLC colleagues sometimes trial a nipple shield, bodywork, craniosacral and myofascial interventions in addition to positional changes to impact the altered fascia and postural mechanism. Although it’s not optimal, if intake and weight gain become concerns with breastfeeding challenges, consideration of interim supplemental bottle-feeding has been successful via a Dr. Brown’s controllable flow nipple (a similar as possible to the controllable breast flow), adding in the blue valve (to avert energy depletion given what sounds like infant’s predominant compression-only sucking pattern). Lots of moving parts for this infant’s bigger picture that will benefit from a skilled pediatric SLP’s eye.