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.


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.


Problem-Solving with Catherine: Repeat Swallow Studies

Fools Rush In – Take the Time To Be Cautious - Blog | Procurious


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

Decision Making Types | Blog EBE


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.


Problem-Solving with Catherine: Infant with “Failed” Swallow Study

Brain tricked into thinking it is fasting to cope better with inflammation

Question: I am looking for research on aspiration and breastfeeding as well as breastmilk from a bottle. I have a 3-month-old that failed swallow study with even honey thick and hospital recommended thin breastmilk in bottle. I am more comfortable with breastfeeding, that gives more control than with bottle feeding. Thoughts?

Catherine’s Answer: Aspiration isn’t just aspiration…the “why”, i.e., understanding the pathophysiology of the swallow, in the setting of the infant’s co-morbidities is essential to determine the best plan for that unique infant. Otherwise, we do the same thing with all infants who “aspirate” and that would not make sense and would be unethical. It’s possible you don’t have that data, although the SLP conducting the VFSS should provide that so you can target your interventions. “Thickening” isn’t a plan for intervention, it’s a step along the way, to buy time for improvement. If you aren’t getting that data from the facility who does your swallow studies, I’d refer elsewhere. A result that says there was “aspiration” is essentially useless as a treating clinician. It’s like the pediatrician telling a mother in his office “yes your child is sick”, and then sending her on her way. useless really. Depending on the data set, your plan of care can vary. A healthy normally developing newborn with the same presentation in radiology is very different than a former preterm infant for example, who has CLD and a paralyzed vocal cord. Also agree that honey level thick (to use non-IDDSI terminology) likely increases risk to invade the airway –if the physiology of the swallow is that impaired, then the likelihood of aspirating honey thick is quite high during the course of a true feeding. Have you contacted the evaluating SLP with parent’s permission to better understand her recommendations and rationale? That might be a place to start too. Lots to unpack here. We also know we cannot extrapolate (from results in radiology of bottle feeding) to assume we understand swallowing physiology at the breast. That is not possible. FEES is our closest source of information, and even so, we cannot fully observe the full dynamic swallow pathway due to “white out”; we can however infer some useful data from FEES pre-swallow and post-swallow information to help guide our interventions. Some missing pieces would help problem-solve this little one. Also, no intervention can be considered in isolation — there is a risk-benefit ratio for each patient that we must consider when selecting interventions. Depending on the etiology and co-morbidities, breastfeeding may indeed be protective, under some conditions more than others.

Problem-Solving with Catherine: Two-Year-Old Gagging with Textured Foods

hand puzzle


I have a 2 year 6-month-old child who was NPO and G-tube dependent until he started feeding therapy again about 5 months ago. He is safely able to consume thin liquids and IDDSI level 4 solids like pudding with no issues. Recently, I’ve started to try textured foods with him. I’ve noticed that he will accept the food into his mouth and chew it up, however, starts gagging shortly thereafter and spits it out. I don’t believe it’s a swallowing issue, but rather a sensory issue and it seems the texture of chewed up food makes him uncomfortable. Does anybody have any advice/tips on how I can help him with consuming textured foods? TIA!

Catherine’s Answer:

To help problem-solve, can you round out the bigger picture, as that is likely key to first understanding the “why” behind what he is doing, to then figure out interventions. At 2 years 6 months, is there a history that will help explain some of this? For example, why was a G-Tube placed? Was he born at term? What are his diagnoses? GI issues? Sensory Processing Disorder? Does he have atypical motor and/or postural and/or sensory-motor issues? Cognitive/communicative status? TOTs? h/o “release” of TOTs? Clarity of connected speech? Was there ever swallow study and what did it reveal about physiology? Is he gaining weight? One of my colleagues wondered if there may be any tonsillar hypertrophy that could create challenges with textured foods; any apparent challenges with thicker purees that may suggest that etiology as well?  It’s very possible that his responses are adaptive behavior, i.e., purposeful, and due to reduced strength and motor control problems. If so, that will be your treatment focus. You are asking good questions. It’s ok to take the time to figure out the why and ask yourself more questions about what you are seeing and the possible reasons. Otherwise, you may select interventions that are not what his system needs, and more maladaptation could be inadvertently fostered.

Problem-Solving with Catherine: Protocol driven clinical weaning of thickened liquids in pediatrics

Chart Label - Thickened Liquids

Question: Is there any current research on weaning protocols and the protocol for children with moderate to severe dysphagia and silent aspiration?

Catherine’s answer:

The team at Boston Children’s has provided us with a wealth of research to help inform our practice. This paper referenced below suggests a protocol for weaning thickened fluids via clinical data. Its implications are far reaching, and its recommendations require critical thinking.

Wolter NE, Hernandez K, Irace AL, Davidson K, Perez JA, Larson K, Rahbar R. A Systematic Process for Weaning Children with Aspiration from Thickened Fluids. JAMA Otolaryngol Head Neck Surg. 2018 Jan 1;144(1):51-56.

Like any other protocol, the key, I think, is considering when to utilize a protocol as a guide, and considering when not to; that is, when doing so may adversely affect the risk-benefit ratio. My physician mentors over the years have referred to this process as the “art and science of medicine”.  It requires us to ask how we thoughtfully apply the findings of any study to our clinical reasoning for each patient individually, to minimize risk of adverse events.

Clearly our repeat studies according to the AAP must be completed with thoughtful justification and careful attention to risk-benefit ratio, especially with infants. It is best practice as stated in the article that “children should be transitioned to non-thickened diets as soon as it is safe to do so.”

However, reducing fluid thickness solely “based on a patient’s’ clinical response” is worrisome to me.

In pediatrics, like in adult care, patient A is not the same as patient B, even though they both have been placed on thickened liquids for clinically sound reasons. Those infants/children with more complex co-morbidities, those who silently aspirated, and those with more precarious swallowing pathophysiology would potentially have greater risk for airway invasion with changes based on clinical data alone. And there may not be clinical suspicion that the wean increases risk, as the SWP proceeds. Universal application of the SWP without a very clear consideration regarding these fragile high-risk feeders may inadvertently increase risk for airway invasion.

Duncan et al in their 2018 study (Duncan, D. R., Mitchell, P. D., Larson, K., & Rosen, R. L. (2018). Presenting signs and symptoms do not predict aspiration risk in children. The Journal of pediatrics201, 141-146.) reported that “Presenting symptoms are varied in patients with aspiration and cannot be relied upon to determine which patients have aspiration on VFSS. The CFE (clinical feeding evaluation) does not have the sensitivity to consistently diagnose aspiration”. Their findings would likely apply to post-swallow study decisions made without benefit of objective data, and that is worrisome.

Perhaps more worrisome is the possible implication from the findings that the value of a VFSS is to identify bolus misdirection and aspiration, rather than to objectify swallowing physiology and pathophysiology as a basis for optimal interventions and their modification. The risk-benefit ratio of a repeat VFSS must indeed be carefully considered, but we must also consider the critical impact of that objective data, about physiology, on any changes in interventions we might consider.

The more I learn, the less black and white answers I have, and I think that is good. For each patient, we will need to continue to develop an algorithm for that patient, that best minimizes risk, in the setting of that child’s unique co-morbidities, history, and the nature of the swallowing pathophysiology objectified. Pausing to consider all the pieces and reflect, will always be the key.

I hope this is helpful.





Problem-Solving: New infant referral but limited experience

Problem Solving Techniques in Artificial Intelligence (AI) -


I did infant feeding many, many years ago. Just got a referral for a 4-month-old, NG tube, congenital heart disease, some bottle feeding. What CE courses would get me up to date ASAP? Most of my feeding work in the past 10 years has been food avoidance and oral motor/chewing related difficulties in toddlers.

Catherine’s response:

It reflects your thoughtfulness that you reached out, as I suspect your instincts are telling you to think this through. Because our cardiac infants are some of our most fragile feeders. Given that her history and co-morbidities are likely complex, she will require some high-level problem-solving to keep her safe and to sort out all the pieces. Even after many years of complex infant feeding, I still have to pause and really think through these complex little ones. She is likely at high risk to invade her airway. Balancing the VFSS results, and her arduous course with family before you can be quite challenging for all of us. Before you accept referrals for infants with feeding problems, take the time to fully understand the underpinnings specific to congenital heart disease and its impacts on feeding and swallowing (and WOB and state regulation and postural control and neurodevelopment), as they will all need to be a part of your differential and plan. The infant-guided interventions for safe swallowing in infants, s/s that suggest a different plan, won’t be available to you right now. So, perhaps think about first building your guided/mentored experience with feeding/swallowing with more complex toddlers, then older more stable infants in EI and then increasing the complexity to younger and more complex infants. Taking courses under the gun isn’t the path to the critical thinking that is required with each population we serve, especially one so fragile. It would be no different if tomorrow I were asked to work in adult ICU at the very large medical center in which I work as a senior neonatal/pediatric swallowing specialist. I could technically treat adults in ICU because it is in our scope of practice as SLPs, but it would be ill-advised, unfair to the patient and family and likely place me in a potentially litigious situation should something adverse happen based on my recommendations or lack of insight, and clearly noted by an attorney or an expert witness from my limited preparation for that population. The risks all around would not be a good situation. If this (infant feeding/swallowing) is a direction you are passionate about, make a “long-term” (not “stop-gap”) plan (perhaps over 6 months rather intense and then an ongoing commitment) to read, read, read the research, take some highly recommended courses about infant feeding, find a mentor whom you can observe and learn along with. The things in life that we become successful at are rarely if ever easily attained. Allow yourself the time and support required.

Problem-Solving with Catherine: 3-month-old with TEF and Vocal Cord Paralysis


QUESTION: I am currently working with a 3 month She had a TEF repair and has a paralyzed left vocal cord. Her most recent MBSS on 9/15/22 indicated delayed initiation, reduced tongue base retraction, reduced laryngeal sensation and primary concern being uncoordinated SSB. She has a PEG tube, and they recommended slightly thickened breast milk via Dr. Brown’s Level 1 and PO intake to be limited to 2 practice feeds daily up to 60 mls. Practice feeds have been going really well, per data her Mom is taking at home, she is slowly increasing volume, reducing the time it takes to consume practice feeds and feeds have been pleasurable with interventions (elevated side lying on right side, external pacing ever 4-5 sucks and thickening breastmilk). Mom also indicates she seems very fussy when the bottle is removed, as she would like to keep eating. Should I ask the medical team about offering oral feeds for a certain length of time (15 minutes) at each tube feeding time if she is showing readiness and as long as she maintains homeostasis and whatever she doesn’t take orally, provide through the tube. She did aspirate thin breast milk her last two swallow studies.

CATHERINE’S ANSWER: Sounds very risky for airway invasion given impaired swallowing physiology in the setting of her co-morbidities. Do we know that in the VFSS thickened EBM was objectified as to its effects? EBM is super thin so when we thicken it slightly and use a Level 1 Dr Brown’s, it seems like that might be too fast flow to minimize air swallowing and bolus misdirection, in the setting of a L VCP and her pathophysiology. What thickener was objectified during the study? Did the radiologist look at upper esophageal function with thickened EBM during the study? How did the swallowing physiology look with the thickening – safe? precarious but no witnessed airway invasion? penetration without aspiration? Thickening may create increased challenges for resistance to bolus flow through the anastomotic site. When as the last UGI/esophagram to objectify whether there is a narrowing? When as she last dilated? Our surgeons typically dilate about every two weeks through the first two years of life. based on what I understand at this point, I would recommend not PO feed until these pieces are sorted out but continue to offer pacifier dips for purposeful swallows to keep her oral-sensory-motor system primed for return to PO.

Problem-Solving with Catherine: 5-year-old with Athetoid Cerebral Palsy

QUESTION: I work in an outpatient pediatric rehab setting and recently saw a 5-year-old boy with athetoid cerebral palsy (CP) and frequent tonic reflex. His suck-swallow-breathing coordination is poor (multiple suckles followed by multiple swallows, then gasp for air), wheezes heavily, and often he has difficulty clearing his phlegm, has poor lingual range/control, uses phasic bite when foods presented. Parents have not had a VFSS done before.
 His parents “force” feed him with bread, which often stays in his tongue/sides of roof of his mouth. With thin liquids fed with a bottle, anterior spillage occurred (he can’t seal with his lips). Except for liquids (bottle-fed) he is often in distress during mealtimes. My other colleagues reported that he was also fed with rice. I tried educating parents and demonstrated to them how he handles puree and thickened milk much better, but they were against the recommendation, and stated that what I interpreted as distress (e.g., tensing/tightening his lips, head turn, increased tonic reflex, protesting (tensed vocalization) during mealtimes, and crying), is just him trying to eat. They claimed that whenever he attempts to do anything, that’s him tensing up, so they continued to ignore my advice and called my observation a ‘cookie cutter’ statement from textbook, which doesn’t apply to their boy. They said the child has never choked with bread all these years, why stopped him now?
I’ve observed him smiling and relaxed when he’s in comfort, and in my experience, if a diet is too difficult for a non-verbal child to manage, these are signs of distress.  He is quite intentional with his communication (smiles and looks at you if he wants an action/object), it’s hard for me to understand where his parents’ perspective.
I wanted to run by you to see if I might have misinterpreted this child’s body cues. What other strategies can you use to convince parents?
I referred them for a VFSS, so they can at least ‘view’ what’s happening when their child’s eating.

Our children with athetoid cerebral palsy typically present with complex swallowing/feeding challenges similar to those you describe and are very often fragile feeders. Their lack of postural stability and excessive postural mobility provide a poor base of support for the head/neck and oral motor/laryngeal/pharyngeal control along the entire swallow pathway. What you are seeing is indeed worrisome related to the swallow-breathe interface, likely caused by “problems down the line” as part of an overall unstable hyolaryngeal and esophageal complex. This affects not only chewing but the foundations for even swallowing saliva with integrity, and, as such, can often create the perfect storm for airway invasion, both silent and symptomatic. Safety of his liquid swallows is very likely adversely affected as well, especially given that the tongue plays a key role in liquid control and transport. The anterior spillage you describe has many aberrant components beyond lip control that likely do impact swallowing integrity and safety, as the entire system must work together in synergy. He likely lacks the stability and control for any solids, both purees (that may lead to stasis after the swallow) and the “pieces” that likely disperse and can be “underperceived” by a sensory system that is also likely adversely affected, given the overall neuromotor picture. The overt distress behaviors you have witnessed are a typical constellation with this diagnosis and its functional implications. His behaviors to some extent reflect what we call adaptive behavior, i.e., refusals and struggle that likely reflect his fear, learned discomfort and indeed possible airway invasion, that then lead to maladaptive feeding/swallowing behaviors. For families, this long-observed feeding behavior has perhaps become what they see as “just him” when he eats or drinks… much like an NICU nurse who at times may view the excessive WOB and tachypnea we witness at feedings with an infant with CLD as “just who the baby is”. But we know that, who that baby or child “is” is indeed worrisome. It reflects risk and is not then “ok”, when it comes to airway protection and indeed neuroprotection, for both children with complex co-morbidities, and for infants.

I suspect this little guy has learned to “struggle through” his parents’ well–intentioned feeding approach, sadly. They don’t understand his feeding behavior and its actual significance, which is his communication to them. And they are likely still grieving the loss of the normal child their hearts expected, so your thoughtful and likely quite accurate assessment of risk is something they may not want to hear, which is understandable in many ways. Our hearts go out to them.

Trust your instincts. The VFSS will be important to help them see the “why” behind his struggles. They are fortunate to have you in his corner.

Problem-Solving with Catherine: Infant in NICU with HIE

Ohio HIE Lawyers | Infant Hypoxic Ischemic Encephalopathy

QUESTION: I have a little patient that experienced prolonged hypoxia at birth and has been diagnosed with HIE grade 3. This patient is currently on oxygen via Nasal cannula and there is retraction during breathing. Also, notable secretions on the lips and pooling in the oral cavity of these secretions. When I went to assess the suck with my gloved finger, even with oral stimulation, no suck was elicited. This patient is currently on NGT feeds. Would you recommend the use of a pacifier to help with the suck and if so, which pacifier is recommended (I’m not too sure which literature to consult on this so any suggestions are appreciated). The hospital I work at does offer the option for instrumental assessment, but they will only do a barium swallow (not even a modified), so I will suggest this and know the patient will likely be for a PEG long term, but any advice and suggestions would be great 🙂

As a side note, the hospital I work at is very under resourced and we don’t have access to great equipment or specialists like pulmonologists which does limit intervention options.



Sounds like this little one has complex neurological sequelae due to the HIE. The absent suck suggests there is also no active tongue movement for initiating or driving a swallow. I suspect her gag/pharyngeal responses are blunted as well. That affects ability to mobilize secretions/saliva posteriorly, to clear the pharynx and move the saliva away from the laryngeal inlet. This constellation of impairments is due to the overlapping function of the cranial nerves that support suck-swallow-breathe, which also “take a hit” as a group when there is hypoxia or ischemia in the newborn. I suspect infant also has diffuse postural hypotonia which provides a poor base of support for the hyolaryngeal musculature, blade and base of tongue, and muscles of respiration. High risk of ongoing silent aspiration of saliva/secretions due to motor and sensory impairments. Likely unable to generate a cough when needs to. Without a swallow response, we would not take infant for a swallow study as we would likely passively see barium invade her airway. Also we clinically see the behaviors s/o an absent swallow.

The history provided is quite helpful for us to problem solve. The clinical presentation as I understand it, in the setting of the infant’s history and co-morbidities, suggests a very poor prognosis for establishing even safe saliva swallows in the near future. I would recommend work up for a G-Tube and Nissan (as she is also at high risk to aspirate refluxate if there is EER, which is more likely given postural hypotonia). Continued intervention via providing postural stability, offering own hands to face/mouth, facilitating rooting response (which is also likely absent), providing deep pressure input to the biting surfaces, to the intrinsic tongue muscles and base of tongue muscles, f/b functional input with your gloved finger and then standard shaped pacifier to facilitate rhythmical responsive lingual movements. It’s a combination of oral-motor, oral-sensory and neurodevelopmental treatment to support motor learning. Intervention will be based on a thoughtful process and change will be slow, based on what we understand so far about the infant’s back story. The pieces we don’t know about birth history, intra-partum and post-partum infant response,  Apgars, how long intubated, progress with state modulation and progress to date neurologically, would all help refine our differential and, I suspect, likely make infant’s prognosis even more worrisome. We offer parents guarded optimism, in that the infant’s story is not written yet and some of our infants amaze us. Early intervention, including ST, PT and OT, and follow through by a supportive family will be key to optimizing progress.


Problem-Solving: 30-month-old with Random Gagging and Altered Swallowing Physiology


Recently, I completed a MBSs on a 30-month-old child secondary to complaints of vomiting, gagging/choking at random. At age 24 months, child had tonsillectomy/adenoidectomy completed secondary to vomiting/gagging with the hopes this would correct child’s difficulties. MOC reports that this did help some however reports difficulties have not completely resolved. Per MOC, child had pacifier until age of 20 months. At time of MBSs child did consume pureed and thin liquids, they refuse all other bolus consistencies. Child noted to have a high palate arch and slightly narrowing in front of mouth. Delayed swallow to the level of the pyriform sinus was observed, suspect secondary to poor retraction and elevation of tongue to soft palate due to high arch. No penetration or aspiration noted. Appropriate ROM with tongue was observed during attempts at oral facial/motor examination. Per MOC, child is a picky eater, consumes 30oz of milk daily, will pocket food and spit it out and gag on water intermittently.

Based off of how this child presents, I would focus on lingual strengthening, age-appropriate mastication patterns and acceptance of age-appropriate foods. For a child of this age, what would your recommendations be for treatment/tasks to obtain these goals/exercises etc.? I am running into a roadblock per say. From my research and reading, I have found great ideas for older children or adults who follow verbal directives, however due to this child’s age, I am stuck!


Is the child otherwise normally developing? Is postural /sensory-motor control age-appropriate?  I am asking because sometimes this type of clinical presentation is part of a bigger sensory processing issue or part of a constellation of craniofacial alterations or alterations across developmental domains. That creates a different “bigger picture” from which to problem-solve.

Craniofacial malformations often co-occur with changes in the muscular network that supports those structures. The high arched (and sometimes “tented”) palate can co-occur as part of a genetic syndrome and can co-occur with mandibular hypoplasia. Mandibular hypoplasia alters lingual and supra/infrahyoid muscular ROM and their functional coordination.

Interestingly, I have seen across the age span that, with this clinical presentation you described, it is not uncommon to have co-occurring tethering of oral tissues. I suspect that, if there are TOTs, this may be because the formation of these structures and muscular attachments occurs around the same time in utero. Then their motor sequences are initially mapped in utero through swallowing of amniotic fluid. So, the underpinnings for a well-integrated oral-motor system are underway quite early. Maladaptive networks also start in utero and the foundations for function can then start off in infancy already altered and impact future function that “feeds forward”, as our PT colleagues call it, in motor learning. So, implications unfold overtime.

If there are tethered oral tissues, or related alterations, they can at times be more subtle. These alterations can create challenges for the emergence of motor plans along the swallow pathway, and for bolus control and manipulation. That may also provoke the air swallowing that can lead to the vomiting/emesis you report. We must of course recognize that tethered oral tissues are not always the explanation/etiology, but should be a part of your thoughtful differential, as it could explain the functional limitations you describe. As could altered oral-facial tone, an altered overriding postural network, and/or sensory integration problems, and other possibilities, depending on the unique “bigger picture” for this child. Thinking through that bigger picture will best guide targeted interventions.

A wonderful resource on the neurodevelopmental underpinnings for feeding development is included in Robyn Walsh and Lori Overland’s book on “Functional Assessment and remediation of Tethered Oral Tissues”. Even if TOTs are not part of this child’s etiology(ies), their tutorial included in their book is not just about TOTs but is a foundational must read on functional oral motor development. By two of our wonderful SLP colleagues.

The swallow study would likely reveal any alterations in base of tongue retraction and pressure generation that may be created if tethering were impacting this child’s swallow pathway. For some children, the oral phase appears most altered, but that of course can cause problems down the line such as gagging and “sudden” loss of control which mother describes, which may reflect challenges with coordination during the dynamic swallow (when the need for exquisite motor mapping is required).

The attached article by my colleague Laura Brooks that adds to our understanding of the potential implications of some of the potential alterations. Even though with your patient there was no witnessed airway invasion, there was an alteration in physiology that likely is connected somehow to the functional differences you are seeing. This may take some peeling apart layers of data through a second and third look. Or more. And it may take a while to sort out and trial the interventions that best meet your differential. And that’s ok. It’s complex but you have a good start.

Click here for Laura Brooks article