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.

QUESTION: I am working with a team of non-dysphagia specialists because of shortage of SLP (not in the USA) in pediatric ICU (PT, nurses). When I arrived, I realized that they do everything wrong in SLP standards : start dysphagia exam too early on, speed dysphagia bedside exam with a bit of water, rely only on coughing to assess if dysphagia is present or not, do not do a single swallow FEES/VFSS, do not even know/care about silent aspiration, progress up very rapidly through textures when mastication is not yet possible in my opinion, give rapid directions to families and do not overwatch. Of course, they refer to SLPs for complicated cases, they are scared with or when they are unsure. We are left with the slowly recovering kiddos. they simply judge by overall recovery. If overall is fine, dysphagia is fine for them. But I feel they would be more complications in the adult population however with this type of approach. I am starting to question my stance on dysphagia eval among children in ICU. Is it way simpler than we may think? Do you have an opinion?

ANSWER: I would continue to use the evidence base as your guide, combined with your clinical expertise. Our PICU patients are often fragile but the adverse response to decisions or approaches that are not consistent with best practice may be silent, may increase need for respiratory support without adverse overt events and the child may “run under the radar” for a while. That doesn’t mean you abandon your critical thinking. Not sure if this is a travel assignment or they are the newly added team members, but you will need to decide how best to advocate for your peds patients and to reconcile this risk. That means perhaps having a conversation with them that is respectful, offering practice guidelines by ASHA or research evidence, thinking about how to gain administrative support to foster collaboration and best practice in dysphagia, and what your next steps will be to assure there is appropriate care and colleagues “do no harm” which you likely have an obligation to address via risk management. Should something adverse occur and there is litigation, your documentation and whether it and your actions were consistent with best practice would be scrutinized and determined by an expert pediatric acute care SLP. Always manage patients and document as if litigation is possible, because it is. Trust your instincts. It’s a really challenging situation but best to take control of it in one way or another versus being a bystander when it may affect your professional practice and patient long-term outcomes. That may indeed be leaving if the risk to you is not acceptable, which is clearly possible based on what we know. I hope this is helpful.

QUESTION:

I work in a pediatric hospital, and we’ve been running into difficulty when it comes to the recommendation to thicken liquids. Our speech dept procedure is not to recommend or endorse a specific product and place that responsibility on the physicians after we relay the MBS results. Often GI doctors are more comfortable with thickening choices, contra-indications, etc. but our pulmonologists and cardiologist feel that they do not have the training to make those choices and don’t feel comfortable. As a dept we want to support our doctors and I was hoping another facility has run into this issue or addressed it and could share their processes. Thank you!

ANSWER:

It is important I think to discuss options with families and providers, and consider home environment, access, cultural preference, caregiver capability and potentially the providers don’t have that insight. This goes a long way towards recommendations and strategies that are more likely to be carried out by families. Along the way we help providers who are not GI specialists benefit from our problem-solving and our ability to bring the current evidence-base to the conversation.

I rarely thicken liquids these days. When it is indicated as a last-resort intervention, based on objective data regarding pathophysiology and potential airway invasion observed during the VFSS in the setting of that child’s co-morbidities, I find a few things quite helpful.

During the VFSS, we have likely utilized particular thickeners that give us objective data about their impact, have flow tested the liquids with those thickeners, and have some impression as to what may be optimal (risk-benefit ratio from swallowing perspective). We might then offer that data as a part of the problem-solving discussion with the physician/team, recognizing that the prescriptive nature of what is ultimately determined by the physician’s order will be a biproduct of further discussion. This is an opportunity to collaborate about patient care and builds relationships with the medical team. This bringing together of each professional’s data and perspective has been referred to as “cross-fertilization”. I love that term and its implications for how we practice or might optimally practice as lifelong learners. With cross-fertilization, everyone’s engagement exposes all professionals to different bodies of scientific literature knowledge, as that supports collaborative practice. We all benefit from these exchanges, especially our patients and families.

Another resource to share with physicians that is, to my knowledge, part of the latest evidence-base we have available, is this wonderful paper by the team at Boston Childrens, including Kara Larson SLP and two amazing GI docs. As it states, the purpose of this review is to discuss current knowledge and recent findings regarding clinical aspects of thickeners for pediatric gastroesophageal reflux and oropharyngeal dysphagia. We review evidence for thickener efficacy, discuss types of thickeners, practical considerations when using various thickeners, and risks and benefits of thickener use in pediatrics.  

Duncan, D. R., Larson, K., & Rosen, R. L. (2019). Clinical aspects of thickeners for pediatric gastroesophageal reflux and oropharyngeal dysphagia. Current Gastroenterology Reports, 21(7), 1-9.

Question:

I have an infant (2-week-old) coming in for a feeding eval next week (mother reported difficulty latching on breast and bottle, feeds last 30-40 min, infant not gaining back birth weight), referred by ENT, script says micrognathia and glossoptosis. I did a quick research scan and didn’t find a lot regarding micrognathia besides osteogenesis. Open to suggestions or any research articles you can point me to regarding this topic… who to refer to? any other treatment you’d recommend?

Answer:

This clinical presentation in infants can be quite complex. Sucking, swallowing and the swallow-breathe interface can all be affected, as can overall postural control and sensory-motor learning. Once you see the infant, can begin your differential about what relevant areas are impacting swallow function, and what other consults or diagnostics might be helpful.

Good that you already have an ENT involved who has evaluated the infant and provided impressions. Do you know if there was a flexible scope done as part of the ENT consult? You may want to check, as that will also be helpful to better understand the functional dynamics of the base of tongue on this infant’s swallow. Due to the glossoptosis, you will likely hear inspiratory stridor created by intermittent obstruction of the base of the tongue against the posterior pharyngeal wall. This can interfere with swallow-breathe interface and alter swallowing physiology. An elevated swaddled sidelying position will help to utilize the effects of gravity to help bring the mandible forward. An instrumental assessment of swallowing physiology will likely be a part of your differential, as there is often altered oral and pharyngeal phase physiology that creates risk for both silent and symptomatic airway invasion with this clinical presentation.

It is also likely that there may be associated tethered oral tissues, as the timing of developmental emergence of structures in utero predisposes these correlations. As mentioned already, the tethering, if it is present, can actually help the infant to compensate for the glossoptotic forces and therefore help keep the tongue from falling farther into the hypopharynx.  This reminds us of how important it is to not “signal react” to one aberration (e.g., tongue tie) , without considering its dynamic influence on the big picture, i.e., releasing the tethering would cause more problems, given this infant’s co-morbidities. So, compensating for the adverse impact of possible tethering on the suck may be a focus. The infant may have a “compression-only” sucking pattern r/t the glossoptosis in and of itself, as it often leads to a thickened and bunched lingual body (intrinsic and extrinsic tongue muscles often don’t develop properly in the setting of this malformation). The altered lingual control can affect not only establishment of suction but also oral bolus control, and cause “problems down the line” (i.e., with pharyngeal function). The Dr. Brown’s nipple with specialty valve may work but sometimes the tongue may be too far back in the mouth to even permit an effective latch with that system. An option would be the Haberman, but without any squeezing of the teat; increasing flow rate would be contraindicated with this clinical presentation, as it would increase bolus size and adversely affect bolus control and airway protection

Co-regulated pacing and resting will be essential, as the infant’s WOB (work of breathing) will be increased. Breathing is typically adversely affected by challenges with airway maintenance created by the need for further retraction of the tongue base that is part of the swallow process. For this infant, that will make it difficult for the infant to maintain the airway as it reconfigures from a respiratory tract to an alimentary retract dynamically during feeding.

Mother will likely need your support to focus on infant-guided feeding (versus volume), learning about what the infant’s behaviors during feeding mean (what infant is trying to communicate), waiting for the infant to root (that suggests he is then, at that moment, better managing his airway and is ready to suck), and thoughtfully and contingently offering interventions to optimize safety.

This wonderful paper by my friend and colleague Laura Brooks at Children’s Healthcare of Atlanta provides valued additional insights for my rationale to consider a swallow study to objectify physiology, given this infant’s co-morbidities:

Brooks, L., Evans, S., Alfonso, K. et al. The Role of Dysphagia Assessment in the Identification of Upper Airway Obstruction in Infants. Dysphagia (2022). https://doi.org/10.1007/s00455-022-10433-5

This pathophysiology Laura describes is not uncommon when an infant presents with these challenges. The alterations along the swallow pathway created by glossoptosis may be part of the reason for poor intake. Perhaps the infant is trying to protect his airway when he purposefully disengages during feeding. I appreciate Laura’s adding to our evidence base and reinforcing that “co-morbidities matter,” as I always like to say.

Question:

I have a question about an NICU patient who is currently 39-3, formerly 25-2. BPD, chronic respiratory, very prolonged intubation. I did pre-feeding milk drops, etc but she never even began cueing until 35 weeks when on 2Liters. I used a Dr. Brown’s Ultra Preemie and progressed PO very slowly due to increased WOB. She has now had steroids and was just weaned to room air this past week. She takes full volume and is doing much better pacing herself and I have upgraded her to a Dr. Brown’s Preemie.  She has always had spells and apnea but for the past 3 weeks every time you go to burp her, she bears down like she is trying to maybe protect her airway from reflux, she then holds her breath and desats. I have tried smaller volumes and burping more frequently but no luck getting her burp until further into the feeding. The desats are not as low as they once were but I just feel like I see so many babies that are suffering from large volumes and experience reflux. She does have occasional choking spells and I offered to do MBSS but was shot down. The neo that day wanted to thicken with rice. We haven’t been thickening very much since I came to the unit and when the neos want to thicken they choose oatmeal. There is also a SIM spit up formula for term babies that is thicker. What should I do in this situation? I fear I am missing aspiration but most of the babies I take for fluoro don’t aspirate and I just see the retrograde flow (reflux). I have read laying them on their right side may help. What are our research proven reflux tools – I know a lot of the answer is -time to mature but is there anything else I should be doing?

Answer:

Sounds like you have offered her thoughtful preparation for infant-guided, neuroprotective feeding. I’d be extra careful about letting her set her own pace, given her respiratory hx. Even healthy term NBs don’t “pace themselves” until closer to 2 months of age per the research. Though she may take breaths on her own with PO, given her hx it is likely the breaths may be even a bit latent or a bit insufficient, or she may have some element of gulping that results in air ingestion. Have you tried burping in elongated sidelying? I find that better takes the pressure off the abdomen than semi-upright burping in caregiver’s lap (since increased abdominal pressure which can provoke EER/LPR). The choking could be co-occurring EER/LPR or events of airway invasion/t mistiming of swallow-breathe interface, which is what we typically see if we were to do a VFSS on an infant with her hx and diagnoses. We rarely thicken too. Seems with Dr Brown’s nipples and contingent co-regulated pacing with resting and elevated elongated sidelying we can minimize EER/LPR events as much as possible and avert need to thicken for reflux. At the same time, we are optimizing the swallow-breathe interface with the same interventions that also minimize/inhibit gulping (and air swallowing). Sim Spit up has a slightly increased viscosity which may help – but I’d try the more strict/frequent pacing. Yes, our neos are strict about VFSS understandably but this hx is worrisome and is the classic presentation that is a silent aspirator when objectified.  Studies show that L side down the for first hour post feeding then R side down the second hour post feeding is optimal based on gut anatomy –but RNs must balance head shaping and “changing position with cares” as well, so it cannot be a perfect world. This is a fabulous paper on reflux! Does not include newer meds due to publication date but is otherwise so wonderful!— Schurr, P., & Findlater, C. K. (2012). Neonatal mythbusters: evaluating the evidence for and against pharmacologic and nonpharmacologic management of gastroesophageal reflux. Neonatal Network, 31(4), 229-241.

Question:

I work in a level 2 NICU.  We are a small unit with anywhere from 0 to 9 babies at a time.  We don’t often have infants with respiratory compromise nor do we have many infants born prior to 30 weeks’ gestation.  My question is in relation to this population:  premature, occasional resp problems that often are managed and then resolve by discharge.

I had an infant recently with difficulty with getting a proper latch on the bottle when presented.  Infant was a 38 weeker, SGA, initial hypoglycemia, fetal cephalhematoma (no fracture or IVH), and initial hyperbilirubinemia.  He has no known drug exposure and MOB was allowed to breastfeed.  Infant appeared to latch well and was satisfied to breast feed as he would be calm and latch immediately to mom’s breast.  However, since mom’s milk supply was still low, and she was unable to feed every feeding, and infant weight gain was important due to SGA, the infant required bottle feeding.  When presented with the nipple the infant was eager, almost frantic.  Despite palatal placement with gentle pressure the infant continued to root for the nipple.  Nursing reported, “I know that I’m not supposed to use chin support but I did.  I felt like it helped him to find and maintain the latch on the bottle.”  I also noticed that the mother had a similar approach to bottle feeding her infant, also including cheek support.  My approach was to swaddle the infant in a cradled upright position.  Doing that along with palatal placement with gentle pressure as well as providing pressure to the corners of the mouth to increase “feedback” helped on occasion but the feeding was still laborious as this still resulted in a lengthy feeding.  My thought was that, I noticed that when the infant breastfed 1. MOB was so quick that the infant did not have time to work up into a frenzy, 2. infant was well wrapped and contained, 3. the infant mouth and face were receiving pressure against the breast.  I was unable to successfully replicate this for bottle feeding.  Additionally, nursing staff decided to try a faster flow.  I watched the mother feed the infant in an upright cradle position, using cheek support as well.  Initial look on the infant’s face was that the flow was fast, but was able to get into a rhythm with feeding.  So, my question is, is cheek and chin support appropriate in this situation?  What should I try in the future for similar situations of excessive rooting?

Answer:

You’re doing a good job trying to sort out what is going on. The population in your Level II NICU sounds very typical, mostly GA 30+ weeks and typical respiratory issues associated with preterm birth, that can indeed affect coordination but are not enduring. May often see increased WOB with intermittent tachypnea due to the aerobic demands of feeding. So, breathing regulation is a component we would want to specifically support.

This little guy due to being SGA likely has some challenges with state regulation and can look/get “disorganized” due to more rapid movement to active alert state. One neo years ago told me the altered state regulation in SGA infants is likely related to the increase in catecholamines provoked when one is born SGA that creates this altered state regulation; this then can create poor latch at times, rapid state change to crying, contributing to an ineffective latch and ineffective feeding. Vestibular input (gentle slow rocking, one per second gentle patting to calm the regulatory system) would be important prior to and contingently during feeding, perhaps starting with a few pacifier dips to entrain the oral-sensory-motor system and promote organization without flow at first.

Of course, as you know, “poor latch” can be for so many reasons, sometimes more than one for an infant. Was managing flow rate at breast well but mom’s supply low. Not latching to nipple readily …my first thought is… was the flow from the man-made nipple too fast so he could not organize suck even to start? Or was it hard for him being SGA to transition to a rubber nipple especially if mom’s breasts are larger? Is odd that sensory input to palate (from, I hope, a drained man-made nipple), did not elicit his root-to-latch sequence. Mom likely learned cheek support from the RN – it of course creates flow without active suction/latch perhaps used to “get him infant going”?? But meanwhile he is not learning to establish the motor mapping for an effective root-to-latch sequence for sucking form the bottle—it’s being bypassed. The fast flow nipple selected by RN would be faster than the breast flow – and combined with cheek support and “pressure to the corners of the mouth”, the flow is likely too much, uncouples swallowing and breathing, and interferes with swallow-breathe coordination, in effect provoking less sucking drive and less intake, longer feedings. Agree with secure swaddle for containment and organization, humeral flexion with hands at midline near face. I’d try elevated side lying with capital flexion, eliciting rooting towards midline/towards chin (i.e., into forward flexion) as it can help with organization and support optimal latch by recruiting the proper motor mapping. The infant’s facial expression as if flow was too fast was real, and he might have then tried to accommodate but has limited capacity to do so, which can lead to subtle effects on coordination and likely learning, sometimes maladaptive behaviors.  I suspect with the faster flow there were still subtle occasions of adaptive respiratory behavior such as slight nasal flaring/blanching, slight chin tugging, slight blinking in an attempt to compensate for the faster flow and its impact on the fine coordination of suck-swallow-breathe. No overt events but still a level of physiologic stress, if observed closely. Cheek support would not be helpful based on what I understand about this infant and his presentation. If you see excessive rooting in another infant, focus on “why” that infant with his unique history might be showing that maladaptive behavior and as you unpeel the layers, you will select an intervention clearly mapped to the etiology. Creating flow via a faster flow rate nipple as RNs selected, or passive increase in flow (via cheek support), may be more like band aids, than an etiology-based solution, which I find can be more effective and at the same time promote learning on the infant’s part, with neuroprotection.

I hope this is helpful.