Question: During rounds there was a question around whether there were any benefits to providing oral stimulation for our intubated NICU infants. I did a quick search to see if there was any literature out there but did not find anything specific to intubated infants. Interested in your insights and experiences.

Catherine’s Answer:

Early oral cares are often provided by bedside RNs in this fragile population of intubated infants, and research documents multiple benefits. A few added thoughts related to our clinical wisdom. The population of “intubated infants” in the NICU as you know encompasses such a wide range of GA, PMA, co-morbidities and levels of physiologic stability and tolerance to interventions.

These indeed are often our most fragile NICU infants. Each one is typically unique, so I always start with understanding that infant’s co-morbidities that led to the need for ventilation. For example, PPHN, CLD, CHD, congenital malformations, neuromuscular disorders, and structural airway alterations, or multiple complex co-occurring co-morbidities, which then often create an even higher risk for adverse feeding outcomes.

Bobbi Pineda in her most recent contribution to our knowledge base reminds us that in the NICU we must be thoughtful and cautious, as we can inadvertently cause harm—- “Careful consideration as to whether each intervention can be done for most infants at a given PMA is complex, and vulnerability of infants in the real-world context must be carefully evaluated.”  To her nugget of wisdom, I would add “the infant’s unique co-morbidities” as critical considerations. They often profile relative overall medical complexity, medical acuity and risk for instability, adverse outcomes, and delays in progression to full PO feeding.  Research has shown that prolonged need for ventilation in preterm infants is a significant predictor for feeding outcomes (Malkar, et al 2015).  We may follow those preterm infants with prolonged need for intubation (greater than 30 days), those intubated stable preterms  approaching the PMA when feeding readiness might be considered, those with prolonged intubation waiting for placement of a tracheostomy for long term ventilation. We may also follow intubated early term, full-term and post-term infants, with their attendant sequalae secondary to co-morbidities leading to admission to the NICU, who are therefore at risk for altered progression to PO feeding.

Fragile preterms if not born early would be fetuses experiencing motor learning and oral-motor learning in utero; their oral-motor movement patterns would be evolving in the context of the containment provided by the uterus, with hands on their face and in their mouth (and alternating touching the placenta per research).The risks for our sick newborns are likely related to altered motor learning (extrauterine and potentially intrauterine) and nosocomial and developmentally-related environmental differences specific to that NICU that may support, or not support, the early oral-sensorimotor underpinnings for eventual PO feeding.

Ideally the neonatal therapist would have standing orders in a level III and Level IV and collaboratively work with the team, especially the bedside nurse, which would then best allow for this dynamic individualized, at times necessarily episodic, intervention —to support those underpinnings.

We then recognize that what interventions are offered, and what are not offered will both be critical—and be unique to that infant’s bigger picture, and the ongoing tolerance of that infant in our hands.

Interventions will involve infant-guided structuring of experiences that most closely align with the optimal oral-sensory-motor environment, which mimics to some extent a variation of those in the intrauterine space (for preterms) and those typical of early life (for sick newborns), laying the groundwork for caregivers’ embracing the complexity of the prerequisites for potential future PO feeding, and building the appreciation for the small steps that are designed to build forward in a thoughtful individualized way—which is key.

While we do not to my knowledge have RCTs to support intervention with these fragile infants, our clinical wisdom and experience clearly support that beginning to unfold this pathway to optimize outcomes has been beneficial.

Almost 15 years ago, one of our APRNs asked me to follow a former 24-week infant with CLD and PPHN, then 45 weeks adjusted age with protracted ventilator dependence. She said, “I hope you don’t think I am crazy since he is still on the vent, but I want to give him every chance to be ready and do his best if he is able to PO in the future. I think you could give him the best chance.” I recall telling her, “Thank you so much for being so proactive and seeing the possibilities to build his oral-sensorimotor readiness and minimize maladaptive behaviors. I’ll be careful every step of the way”. And she said, “Just what I thought.” That is team collaboration on the infant’s behalf.

While we don’t always have published research for what we do in the NICU, we do have our critical thinking, and the cross-fertilization of knowledge through collaboration with a thoughtful NICU team.

I hope this is helpful.

Pineda, R., Kellner, P., Guth, R. et al. NICU sensory experiences associated with positive outcomes: an integrative review of evidence from 2015–2020. J Perinatol (2023)

Malkar et al (2015) Antecedent predictors of feeding outcomes in premature infants with protracted mechanical ventilation. Journal of Pediatric Gastroenterology and Nutrition, 61(5), 591-595).

Question:  On our Pediatric Unit (age Newborn to 18 years), particularly Pediatric Intensive Care, our physicians are not on the same page as to WHEN to start PO trials for Peds patients, when on HFNC.  One Intensivist has ordered Eval on kids at 8L and wants us to proceed.  Other Intensivists are stating 6L or less, and our pediatricians want 4L or less.  I want an evidence-based guide for ALL STAFF to be on the same page, including the nursing staff. With a high level of admissions in PICU for this current Respiratory Season, this is coming up way too often.   Most of our nurses prefer the 4L or less, and really trust and allow Speech to make the call on appropriate level, considering the whole evaluation process.  I have one ROUGE nurse, however, that follows infant “cues” only, and doesn’t seem to consider other contributing factors; thus, she just loves when ST is not around and she will get the MD to order a Nurse Swallow Screen, and plop them on the bottle or breast, no matter what the mechanism or Level of O2 support.  I want to establish a more “black and white” approach, or perhaps at least an algorithm or flowchart for reference for ST to use in our decision making.

Catherine’s Answer:  This dilemma is a common and daily challenge for those of us who work in a Children’s Hospital, both in PICU, our peds units, Pediatric Cardiac Intensive Care and the NICU.

The evolving science about the impact of respiratory support on the swallow-breathe interface is sparse and more robust for our NICU population, yet that too is actually still in its infancy, as a guide for our clinical practice. To some extent, the NICU population has more common etiologies and co-morbidities that may allow some guiding tenets to assist us, but even so, each infant is an individual patient for whom algorithms, without carefully considering the unique nuances of that infant, can lead us down a pathway that may inadvertently be problematic and unsafe.  In addition, we have multiple caregivers in PICU both within physician specialties and our nursing colleagues who bring their unique experiences, training, and perspectives on the critical factors essential to optimize the safety PO intake in children requiring intensive care.

For each patient in PICU, multiple factors will influence our impressions, our recommendations and our thoughtful conversations with the team—-i.e., the nature of our PICU patients –with their often multiple complex co-morbidities (or lack of premorbid co-morbidities when otherwise normally developing), whether they have a history of previous hospitalization and why, their varying reasons for admission, their different trajectories in terms of where they are at in recovery from (or resolution of) the event or events that provoked admission, their respiratory history, their feeding history; the need for early yet well-timed instrumental assessment for objective data about the impact of respiratory support on swallowing physiology—avoiding a study executed too early that may create and artifact in the data set. These factors that underpin critical thinking, and our differential and plan, are not easily mapped into an algorithm. One of my neonatology colleagues refers to this as the art and science of medicine, and I suspect the consideration includes the work we do as well. A gifted caregiver, he always says we have algorithms but remember to pause to really “look” at your patient every step of the way. I love that mantra and use it every day.

A focus on patient specific factors will be key: premorbid and current co-morbidities, acuity of illness, trajectory of their medical course (are they weaning support? How smooth has weaning been thus far? Has there been need for escalation? What about the last 48 hours?), your clinical impression of prerequisites for tastes or PO trials – or current resolution of interval clinical concerns—that underpin readiness to PO), the potential risk for that child if aspiration occurs and how that might impact overall recovery. Then we have to use a dynamic cautious co-regulated approach at all ages with continuous multisystem analysis and collaboration with the team.

There will always be those caregivers in any discipline who choose to operate outside the team, whom you described as rogue; rules and algorithms likely won’t change their ways of interaction. While it may seem a black and white process would be a good fix, it doesn’t allow for the required daily dynamic thinking unique to caring for a PICU patient that is changing and whose course is evolving. I think the thoughtful “cross fertilization of knowledge” as I like to call it, among team members caring for that patient via dialogue at Rounds and at each consult and, most importantly, in our many casual conversations with our PICU colleagues in between patients, that builds a foundation for caring for each patient uniquely every time. That can still be evidence-based, which of course includes the professional knowledge base each discipline brings to the conversation but allows room for a dynamic approach to each patient moment to moment, and collaboration. That way, through this cross fertilization of knowledge each of us grows and learns, and our combined perspectives can be mulled over and considered in concert with each other. Once a patient care process such as this is set in motion, it is amazing how it fosters collaboration, partnership, and professional courtesy that then can lead to optimal outcomes for the child and family.

An algorithm cannot encompass all components of a patient’s gestalt nor consider all the potential “whys” that might be relevant to that unique PICU patient. We out of necessity need to leave some room in our dynamic plan of care to accommodate that and build on the team’s joint perspective. It’s no different that our PICU Intensivists who likely have some guiding tenets for caring for a child with TBI, but the dynamic treatment will be carefully adjusted day by day based on the current data set —there is no one algorithm for intensive care processes with a TBI, as that may be an infant post shaken baby event, or a previously normal 10-year-old, or a toddler with premorbid ASD. We do often find that those children who have been otherwise normally developing prior to being admitted, for example with an acute respiratory illness or a viral process, may experience more rapid resolution and follow the trajectory for recovery of an acute process. Those with premorbid co-morbidities or with an acute on chronic respiratory process will typically take a different path and require more caution and deliberation along the way.

Part of the passion for PICU care for all disciplines comes from the deliberation, the joint attention, the learning from each other, the discussions and the incidental learning that takes place every day. Living in the “grey zone” where the answers are not black and white, and the path is built on asking questions, and follow-up questions, not having immediate answers, is what brings us back each day to grow and learn along with our colleagues, and from each patient collaboration, and then the team takes away “key learnings” to build the clinical reasoning for the next patient.

Two recent references:

Rice, J. L., & Lefton-Greif, M. A. (2022). Treatment of pediatric patients with high-flow nasal cannula and considerations for oral feeding: a review of the literature. Perspectives of the ASHA special interest groups, 7(2), 543-552.

Raminick, J., & Desai, H. (2020). High Flow Oxygen Therapy and the Pressure to Feed Infants with Acute Respiratory Illness. Perspectives of the ASHA Special Interest Groups, 5(4), 1006-1010.

Question:

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.

Question:

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.

Question:

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.

Question:

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.

Question:

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.

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.

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.

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 pediatrics, 201, 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.