Problem-Solving: Use of Cheek Support in the NICU – The Bigger Picture Beyond Volume

I wanted to share this question posed to me by  Suzanne Evans-Morris PhD, SLP. One of my mentors early in my career as a pediatric SLP, she is amazing. Her key teachings about the postural mechanism and sensory-motor learning that underpins feeding and swallowing are foundational. You can reach her through her website,   www.New Visions.com. My favorite place on her site is the section called “Feed Your Mind”. Reinforces the importance of each of us being a lifelong learner !

Question:

If an infant has an inefficient suck because of lack of buccal fat  pads and often slightly low tone the combination can result in too wide a jaw excursion and a very inefficient suck.   Why would you not give jaw and cheek support (as needed) to make the whole coordination process easier and less fatiguing?  If the baby’s resulting suck, then,  is strong enough to receive too fast a flow, I would think that the solution would be to use a nipple with a slower flow rate, not eliminate the support that improved the suck.   If nurses are giving too much support, it would also help to provide the training to create guidelines for the amount of support that is just right for each infant.

Answer:

With all of our NICU babies, the value or adverse effect of strategies requires consideration of a number of underlying and related issues. One must consider the whole infant, i.e.,  co-morbidities (respiratory, airway, sensory-motor, and GI) when looking at supportive/compensatory techniques for feeding/swallowing.

Sucking pads are believed to develop in the last month of intrauterine life, so approximately 36 weeks in utero. They are not available to many preterms. In normal postural/oral-motor development, the cheeks and lips are not fully active (i.e.,  not the key driver) for feeding in the normal newborn until 3-4 months of life. Prior to that time, the cheeks/lips (they work as a system) posture on the nipple/breast for stability–they do not actively form an anterior seal to obtain the fluid bolus. As a result, the nutritive suck is achieved through a strong “tongue-palate” seal. I have seen a couple newborns and preterms with, unfortunately, multiple hemangiomas that eroded the cheeks and lips right after birth; each was able to feed effectively (no cheek support needed) due to an intact tongue and palate, and, therefore, a tongue-palate seal.

Even with a slow flow/controlled flow nipple, our vulnerable preterms can get too much flow, too large a bolus. When we add cheek support, we will increase the flow rate and the bolus size. Because most preterms have very strong sucks, often too strong for their own good, and are “stuck in sucking” much of the time, as Pamela Lemons wrote, caregivers must look at the dynamic, or synactive, impact of  all interventions on each other. If cheek support is used, it affects more than the suck, in other words.

Increasing the flow rate, or doing so inadvertently through cheek support, is not supportive for preterms’ swallowing safety. While it will increase intake (efficiency of feeding), it is likely to result in physiologic instability. This may or may not be apparent as aspiration events in preterms are most often silent in my clinical experience. The anatomy of the preterm and the physiology of the swallow predispose the infant to easily overfill the valleculae; this, combined with a tendency toward increased work of breathing and an increased respiratory rate, along with neuromotor and neurologic immaturity, can render the airway unsafe. The preterm is unlikely to be able to make the dynamic adjustments required as the pharynx reconfigures itself from a respiratory tract to an alimentary tract  and back to a respiratory tract with each swallow, especially if it occurs in the presence of flow that may readily move to a rate beyond his capacity.

We can provide the postural stability to offset lack of sucking pads through effective swaddling with limbs to the body midline, elbows inside the blanket, an elevated sidelying position, neutral head neck flexion with slight tilting down of the chin.  Using this infant guided approach, via offering a slow flow nipple by eliciting the infant’s active rooting response,  is followed by  contingent co-regulated pacing and resting,  based on the infant’s continuous feedback to help suck, swallow and breathing remain coupled and synchronous.

I have  observed preterms offered cheek support during a Video Swallow Study (to assess its impact on the swallow, as it was being used at bedside by well-intentioned caregivers). They were observed to typically overfill the valleculae and penetrate or aspirate as a result. Matthews wrote years ago that, with preterms, it is not the work of “sucking” that makes feeding challenging but the work of trying to “breathe” in the presence of a flow they cannot manage safely, which in turn then inhibits/disrupts breathing.

If volume is the overriding goal, cheek support may be viewed as a critical tool by some caregivers, and often unfortunately is.  With continued progression toward true infant-guided feeding, and away from volume driven feeding,  the reasoning behind not using cheek support for preterms will hopefully be more readily understood by our nursing colleagues. Until then, learning along with our nursing colleagues while we feed infants will open up discussions about the “why” behind our protective strategies, and the impact of well-intended volume-driven strategies on swallowing physiology and neuroprotection.

 

Follow up commentary from Suzanne Evans Morris:

Catherine,

Thank you so very much for your detailed commentary looking at the interacting factors affecting a premature infant’s coordination of suck-swallow-breathe, and the negative impact that providing external jaw/cheek support can play.   It was so clear, and I have learned a lot.

Suzanne

Suzanne Evans Morris, Ph.D.

New Visions

 

Research Corner: Best Practices in VFSS

Wanted to share this recent publication on best practice for swallow studies,  which brings to practicing clinicians both the state of the science and best practices from leading researchers.

Martin-Harris, B., Canon, C. L., Bonilha, H. S., Murray, J., Davidson, K., & Lefton-Greif, M. A. (2020). Best Practices in Modified Barium Swallow Studies. American Journal of Speech-Language Pathology29 (2 Suppl), 1078.

Abstract:

Purpose: The modified barium swallow study (MBSS) is a widely used videofluoroscopic evaluation of the functional anatomy and physiology of swallowing that permits visualization of bolus flow throughout the upper aerodigestive tract in real time. The information gained from the examination is critical for identifying and distinguishing the type and severity of swallowing impairment, determining the safety of oral intake, testing the effect of evidence-based frontline interventions, and formulating oral intake recommendations and treatment planning. The goal of this review article is to provide the state of the science and best practices related to MBSS.

Method: State of the science and best practices for MBSS are reviewed from the perspectives of speech-language pathologists (SLPs) and radiologists who clinically practice and conduct research in this area. Current quandaries and emerging clinical and research trends are also considered.

Results: This document provides an overview of the MBSS and standards for conducting, interpreting, and reporting the exam; the SLPs’ and radiologist’s perspectives on standardization of the exam; radiation exposure; technical parameters for recording and reviewing the exam; the importance of an interdisciplinary approach with engaged radiologists and SLPs; and special considerations for examinations in children.

Conclusions: The MBSS is the primary swallowing examination that permits visualization of bolus flow and swallowing movement throughout the upper aerodigestive tract in real time. The clinical validity of the study has been established when conducted using reproducible and validated protocols and metrics applied according to best practices to provide accurate and reliable information necessary to direct treatment planning and limit radiation exposure. Standards and quandaries discussed in this review article, as well as references, provide a basis for understanding the current best practices for MBSS.

Click here to view/download from NIH Best Practices in Modified Barium Swallow Studies (nih.gov)

 

Research Corner: Critical Thinking Skills

Many of you know about Dysphagia Café, a wonderful resource for SLPs. The attached link will take you to an article just posted there by  Ed Byce, M.Ed. CCC-SLP and  Angela Van Sickle, PhD, CCC-SLP on critical thinking. Such foundational information to put our knowledge into action as we problem-solve patients across the age span and co-morbidities. Filled with clinical references, it reinforces the importance of being life long learners and is a must read.

A quote from their conclusions:
The good news is that the progress of gaining knowledge can be measured incrementally, one bit of information at a time. Now the proverbial ball is in your court. Take some time to set goals for learning. Will it be one article a week? Two per month? Will it be starting a journal club to review the information with colleagues? Perhaps it will be developing a robust data collection system? There are many possibilities, but it is worth the journey because patients are counting on you! 

 I think it’s so easy to look for a cookbook or an algorithm, and it gives us a sense of security. It is perhaps a false sense of security, given our complex patients,  each of whom is unique in terms of history, co-morbidities and clinical progression. Each needs a unique algorithm. As the authors so eloquently explain, problem-solving always requires a deeper dive, filled with knowledge but also with questions that help us complete our differential. This article really should be a must read for graduate students,  to reinforce that living in  the “gray zone”,  as  like to call it,  i.e., stepping back and pausing, not expecting yourself to have all the answers or a quick answer,  is ok.  And it is not only ok, but also essential. It underpins critical reflective thinking,  and best supports effective patient care, no matter what the age or co-morbidities.

Building a Knowledge Base to Improve Critical Thinking Skills – Dysphagia Cafe  

 

Problem-Solving: Laryngomalacia in Level 2 NICU Infant

QUESTION: I am currently seeing a full term baby in our level 2 nursery. She has an inhalation stridor. At times her stridor is quiet & other times very loud. She had a fees completed & the ENT noted a minor laryngomalacia ; he also reported it was so minor that it should not effect feeding but is causing reflux. She is only takes under 7 ml at each feed the rest is through her ng. We have noticed a decrease in her oral feeds last week she as taking over 49% PO & now less then 20%. I suspect shut down. She is being held semi upright & side lying , using Dr Brown preemie nipples & being paces at 4. Which is very conservative. she is also disorganized with her latching. She will latch then suck 2-4 then push the nipple out of her mouth & also some of the breast milk. She does desaturation down to 86 at times during her feeds – hence the strict pacing. We don’t have infant VFSS at our hospital & the ENT did not see her take a bottle during the fees.
I am thinking we should have her transfer her to a NICU to get a VFSS but I honestly don’t know.

ANSWER:

I think you are correct to be concerned. Her behaviors are worrisome, especially given that multiple papers have associated LM with airway invasion in infants. A google scholar search will yield several.

The dynamic adjustments of the airway surrounding the swallow create the perfect storm for airway invasion, often silent, in our little ones with LM. The infant’s behaviors
(“disorganization” that may indeed be purposeful due to not wanting to suck in order to protect herself, limited drive to feed – purposeful – to stop the experience and/or due to the effects of increased WOB, pushing the nipple out likely to stop the flow which may be being mis-directed, desaturations which have been correlated in the research with aspiration in some NICU infants and is potentially suggestive of insufficient depth and frequency of breaths which would be common with LM).

On an interim basis I would consider an ultrapremie nipple to add even more protection by reducing bolus  size and affording even more support toward our interim goal of sufficient and timely breaths, as we wait for VFSS. Impact of interventions and their combinations could then be objectified in radiology. More strictly pace her, i.e., single sucks, or 1-2 sucks max to proactively further limit bolus size and hopefully increase coordination for now.  If  she is pulling off the nipple after at times 2 sucks, she is telling you that even 2 consecutive sucks are beyond her capacity to manage – either related to bolus size delivered and/or need for a breath sooner then every 2 seconds. Perhaps limit PO trials to with you only for now, unless  there is  no risk for well-intentioned focus on volume by caregivers.

An instrumental assessment will be critical not just to determine if she is aspirating, especially given that radiology is only a moment in time,  but more importantly, to objectify her dynamic swallowing physiology, and the impact of interventions. My clinical experience has been that many of our NICU infants with LM, even those without multiple co-morbidities,  are silent aspirators.

I find it is not uncommon for ENTs and neonatologists to not connect LM with risk for airway invasion and our results in radiology are often unexpected when we share them. Good critical thinking. Trust your instincts with these little ones and continue to listen to their communication just like you did.

My colleague, Ramya Kumar MS. CCC-SLP, BCS-S, CNT, IBCLC, NTMTC mentioned consideration of trialing alternative side down with elevated sidelying, as she has seen under FEES that infant’s with stridor often have arytenoid prolapse which seems to be more dominant on one side vs the other for some reason. That makes so much sense anatomically. Gravity can surely be a friend or a foe to our little ones.

 

 

 

Research Corner: An Overview of Tracheostomy Tubes and Mechanical Ventilation Management

Barnes, G., & Toms, N. (2021). An Overview of Tracheostomy Tubes and Mechanical Ventilation Management for the Speech-Language Pathologist. Perspectives of the ASHA Special Interest Groups, 1-12.

This is a wonderful addition to our working knowledge base about tracheostomy. While it is focused on the adult population, it provides quite useful information and clinical reasoning to inform the practice of pediatric therapists.

 Authors’ conclusion:

 SLPs are a vital part of the clinical team for patients with tracheostomies and on ventilators. New SLPs or SLPs new to this population may not have an adequate knowledge base to become an effective part of the clinical team. This clinical focus article, although not all inclusive, is an overview of respiratory considerations, disease processes, medical considerations, and complexities that effect the overall prognosis of tracheotomy and ventilator patients. Basic explanations of tracheostomy tubes, ventilation, and weaning have been provided as well to familiarize SLPs to the terminology. Overall assessment of the patientsmedical conditions, respiratory status, oral condition, speaking valve tolerance, voicing ability, secretion management, swallowing ability, and interventions are outlined to give the SLPs a comprehensive picture of these complex patients. A working knowledge in these areas is crucial for SLPs to become effective members of the clinical team involved in facilitating the patientsrecovery. It is highly recommended that this clinical focus article be a starting  point and encourage SLPs new to this population to further their knowledge base with education courses, hands-on training, and review of current literature related to tracheostomy and ventilated patients.

Problem-Solving: Reflux Medication Administration in the Setting of Aspiration

Question

I have an ex-preemie (now adjusted 40 weeks) being worked up for laryngeal cleft – aspirated thins on swallow study even with Dr. Brown Ultra Preemie, but is doing ok with mildly thick liquids for PO; however, he is also on Prevacid and the nurses are mentioning he’s sounding congested when they administer the med (likely aspirating med as it’s not mildly thick consistency).  I typically add other meds to a little bit of the thickened formula to solve this issue; however, Prevacid has to be given on an empty stomach so mixing with formula doesn’t seem to be a good option.  Any suggestion on how to thicken a med that has to be given on an empty stomach?  Also he’s an ex-31 week preemie with a history of r/o NEC, so Simply Thick is not an option

Answer

The onset of congestion with the meds administered unthickened is potentially more worrisome in some ways than aspirating the feeding, from a pulmonary perspective.

You don’t indicate the aspiration was silent in radiology, but he may be at risk for occasions of silent aspiration, given that EER/LPR may be part of the differential and alter laryngeal/tracheal sensation. His potential respiratory issues as a former 31 weeker may add further risk, in the setting of the possible laryngeal cleft. It is possible the audible congestion, especially if it is heard “in synch” with inhalation/exhalation after administration of meds,  reflects airway invasion.

As I understand the limited history above, it sounds like there is no NGT access or they’d be using that for meds. As we consider the relative the risk-benefit ratio for this infant with his clinical presentation, then the risk for airway invasion of the med being offered unthickened is likely going to outweigh the benefit of delivery of the unaltered Prevacid to the gut prior to PO.

Most of the time, while 30″ prior to feeding is recommended for Prevacid administration, the nurses often give the GI meds just prior to feeding to avoid waking the infant earlier. So, it’s unclear to what extent most NICU infants can really take advantage of the time period prior to PO that likely affects positive impact of Prevacid. If the nurse is indeed waking him early to PO, I think the risk-benefit ratio for this infant that I described above still should be considered.

Since you have objectified an apparently approved thickener deemed safe if radiology for swallowing/feeding, I would use perhaps 5mls of that to offer the Prevacid before PO. Is that a perfect solution? No, but it is likely most protective of pulmonary function at this time, based on what we know. In related conversations with our pulmonologists and GI docs, this is the kind of critical thinking have heard them model and that I am fortunate to be exposed to.

His top priority seems right now to be airway protection at this point in the workup, based on data gathered. Reflux may indeed be part of the differential for management, and potentially contributing to his aspiration, but it may have to be a secondary priority at this time, for now.

Perhaps have a conversation with the MDs about their thoughts on the risk-benefit ratio for this infant. Physicians are used to living “in the gray zone” and weighing risk-benefit ratio, so it will be a familiar approach for them, and open the door for collaboration.

 

Problem-Solving: Laryngeal Penetration during Pediatric VFSS

QUESTION:

Some of the SLP’s completing VFSS in the pediatric population are making recommendations solely on penetration. If the child penetrates they assume they will aspirate (due to gravity) and downgrade them to the thickest liquid they don’t penetrate or aspirate with. The reports I have received have not mentioned whether the infant attempts to cough or clear the penetration. I frequently complete fees with the adult population, but my experience is more limited with the pediatric/infant population. Adults will penetrate and clear independently with additional swallows or throat clear/cough to remove the penetration before they aspirate. I’ve also seen flash penetration in adult VFSS does that happen with infants?. I would love some opinions to help guide my practice.

ANSWER:

Infants and children aren’t little adults in so many ways, especially when it comes to swallowing. I’ll share some of the concepts that have influenced my practice and are part of my passion when I teach my seminar about pediatric/neonatal swallow studies.

One of them is that laryngeal penetration, when witnessed,  doesn’t exist in a vacuum. Dr. Coyle has taught us that the significance of penetration, even in the adult population, is on a sliding scale. I love that. He is always so descriptive. I think he means that we have to make decisions on a case-by-case basis, by combining all available information, there is no one size fits all analysis and plan. Then we develop a management algorithm for that patient, with unique co-morbidities, risk factors, history and so on. Each infant/child is unique in birth history, feeding history, postural, sensory-motor, aerodigestive, neurologic status and caregiver attributes. Combined, they all can affect not only what we might witness in radiology but how the infant/child may respond, compensate, or  be affected, and from moment to moment. For example, for our infants, their respiratory co-morbidities will increase the risk for airway invasion, especially under the “right conditions” (i.e., interval change in sucking rate or strength, change in RR or WOB, caregiver artifact). Data analysis in radiology must consider the unique algorithm best for that infant/child based on the available data and understanding of the implications in that context/setting. An otherwise normal infant/child would very likely have a different algorithm after radiology.

Our data set in radiology is limited in so many ways. We must look at the data gathered and focus on the physiology; impressions may be tenuous. We cannot focus on just the events of bolus mis-direction in and of themselves.  A swallow study really is only a moment in time. Bonnie Martin Harris has told us that “aspiration or penetration is neither sufficient nor necessary for a swallowing impairment”. Dr Coyle describes the swallow study as an analysis of how and why the abnormal bolus flow occurred. The alterations in or impairment of physiology, and why that infant/child penetrated,  must influence our critical thinking, and must inform our plan.

All events of laryngeal penetration are not alike in children, and that influences our analysis as well. Their frequency and depth, in the setting of the co-morbidities and age and pulmonary health, are important factors. Friedman and Frazier (2000) found that of those infants/children with witnessed deep laryngeal penetration, 85% went on to aspirate when the swallow study was extended. This correlation between deep laryngeal penetration and aspiration is an important consideration in our “bigger picture” analysis with infants and children. Duncan et al (2019) concluded that laryngeal penetration may be indicative of aspiration risk in children less than 2 years of age. It is also associated with negative clinical outcomes (Gurberg et al, 2015, and Duncan et al, 2019). Duncan’s group concluded that “Any finding of LP in a symptomatic child should be considered clinically significant and a change in management should be considered”.
Another consideration and a key one is what we understand about the evolution of swallowing physiology from infancy toward adulthood. It is closely intertwined with, and highly influenced by, evolving structural relationships of the head/neck, development of maturing postural control and the musculoskeletal network that underlies hyolaryngeal function. At different points along that developmental trajectory, the components of swallowing physiology that guide bolus flow evolve in synch with a gradually more adultlike postural mechanism. Along the way there is: encephalization, sensory-motor learning, skeletal changes, and growth of the larynx. (Ruark, 2002; Gosa, 2013, Riley et al, 2019) At various times along this continuum, physiology is evolving and thus the need for all the considerations I have mentioned about above. This evolution truly is delicate ballet and can be precarious at times. Normal infants and children adapt, and this evolution happens behind the scenes, unnoticed, giving the sense that it happens effortlessly. Not so for the infants and children who land at our doorstep whether in in radiology, early intervention, the outpatient clinic, or our children’s hospital.

Unfortunately, due to adverse effects of radiation exposure, we don’t have data across a wide range of normal infants/children to delineate the variation in pediatric swallowing physiology that may represent normal variation. So, we must peel apart the layers thoughtfully and carefully as each piece of data is obtained.

Perhaps have some dialogue with the SLPs you mention who have sent you reports, so you can learn along with them. Thickening is not always the best intervention either in adult or pediatric dysphagia, and at times may indeed create more risk. That said, some still see thickening as the go-to intervention and yet there may be other or better alternatives for a particular infant/child. There may not be. Have a conversation with that therapist about her/his impressions, rationale, and selection of interventions, and review the study together if possible. That would help build your own understanding of the unique considerations specific to the infants and children you may be following and will build a relationship for future collaboration.  As therapists, we often need to live in the gray zone, as I like to call it, where questions are more common than answers and the answer is rarely straight forward, but that is also the pathway to being a lifelong learner.

I hope this is helpful. Thanks for reaching out.

Duncan, D. R., Larson, K., Davidson, K., May, K., Rahbar, R., & Rosen, R. L. (2019). Feeding interventions are associated with improved outcomes in children with laryngeal penetration. Journal of pediatric gastroenterology and nutrition68(2), 218-224.

Friedman, B., & Frazier, J. B. (2000). Deep laryngeal penetration as a predictor of aspiration. Dysphagia15(3), 153-158.

Gosa, M. (2013). Infant Airway Protection Mechanisms During Swallowing. Perspectives on Swallowing and Swallowing Disorders (Dysphagia)22(4), 156-160.

Gurberg, J., Birnbaum, R., & Daniel, S. J. (2015). Laryngeal penetration on videofluoroscopic swallowing study is associated with increased pneumonia in children. International journal of pediatric otorhinolaryngology79(11), 1827-1830.

Riley, A., Miles, A., & Steele, C. M. (2019). An exploratory study of hyoid visibility, position, and swallowing-related displacement in a pediatric population. Dysphagia34(2), 248-256.

Ruark, J. L., McCullough, G. H., Peters, R. L., & Moore, C. A. (2002). Bolus consistency and swallowing in children and adults. Dysphagia17(1), 24-33.

 

 

 

Research Corner: Vocal Fold Movement and Silent Aspiration after Congenital Heart Surgery

This is a wonderful addition to our evidence base related to the potential impact of the need for heart surgery on airway protection in our infant population. Combined with the documented increased risk for R vocal fold motion impairment post ECMO in this same population, it can aid us we advocate for our involvement in safe progression to PO for this vulnerable infants.

Citation: Narawane, A., Rappazzo, C., Hawney, J., Clason, H., Roddy, D. J., & Ongkasuwan, J. (2021). Vocal Fold Movement and Silent Aspiration After Congenital Heart Surgery. The Laryngoscope.

Abstract

Infants who undergo congenital heart surgery are at risk of developing vocal fold motion impairment (VFMI) and swallowing difficulties. This study aims to describe the dysphagia in this population and explore the associations between surgical complexity and vocal fold mobility with dysphagia and airway protection.

Methods

This is a retrospective chart review of infants (age <12 months) who underwent congenital heart surgery between 7/2008 and 1/2018 and received a subsequent videofluoroscopic swallow study (VFSS). Demographic information, Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery (STAT) category of each surgery, vocal fold mobility status, and VFSS findings were collected and analyzed.

Results

Three hundred and seventy-four patients were included in the study. Fifty-four percent of patients were male, 24% were premature, and the average age at the time of VFSS was 59 days. Sixty percent of patients had oral dysphagia and 64% of patients had pharyngeal dysphagia. Fifty-one percent of patients had laryngeal penetration and 45% had tracheal aspiration. Seventy-three percent of these aspirations were silent. There was no association between surgical complexity, as defined by the STAT category, and dysphagia or airway protection findings. Patients with VFMI after surgery were more likely to have silent aspiration (odds ratio = 1.94, P < .01), even when adjusting for other risk factors.

Conclusion

Infants who undergo congenital heart surgery are at high risk for VFMI and aspiration across all five STAT categories. This study demonstrates the high prevalence of silent aspiration in this population and the need for thorough postoperative swallow evaluation.

This will inform your pediatric practice whether in the inpatient or community pediatric setting.

Problem-Solving: Duration of utilizing side lying positioning for feeding

QUESTION:

I haven’t found anything specific in the literature, but I cannot think of a rationale for ceasing a sidelying at 4 months of age.  I heard this at a course. I nursed all 4 of my own children until they were around 1 year of age, which means that they were in  sidelying (each side) during feedings for 1 year.  I also find that if a baby with an intact sensory system has the drive to resist a side lying feeding position,  then they are likely no longer in need of that protective positioning.  I did read the abstract to the systematic review that was done by Park, Pados and Thoyre, but since I didn’t have access to the full article, I can’t swear that a timeline was not referenced, but it wasn’t suggested in the abstract.  If the parent is capable and the baby accepts, I will have the parents feed from both sides if they are capable and steady and the baby will accept it, being mindful of vision development and head shape.  I am curious to know your thoughts on the matter.

ANSWER:

For me it is all infant-guided. I let the infant tell us. There is no arbitrary age for anything really, it is based on developmental readiness for a change, less need for a support.  I suggest parents trial a more typical feeding position when infant has been home for a month or so and has been feeding without stress in a sidelying position.  If the infant feeds as well in the new position as he did in sidelying, then the infant is telling you he is ready for the new position. If he does not feed as well in the new position, he is telling you he is not quite ready for a change and still wants that developmental support provided by sidelying.

An exception would be if the sidelying position with specific  L or R side  down was prescribed post swallow study or post-ECMO or post-PDA ligation. Then the change should coincide with therapist guidance and, if indicated based on etiology,  a repeat instrumental assessment of swallowing physiology.

Problem-Solving: Ten Year Old with Cerebral Palsy

QUESTION:
I am a young clinician with a patient that has recently had a follow up swallow study that showed poorer results than original swallow study in absence of change in medical status.

Patient is male, 10 with CP. I’ve seen him for feeding and social/emotional communication around mealtimes due to intense frustration. Recently he got a swallow study that shows aspiration for thin and half nectar by straw and sippy cup due to volume. Nectar showed no a/p. Silent aspiration on 5/20 swallows. He eats all solids and had no a/p on previous and most recent MBSS.

Recommendation following swallow study was to use Thick It to nectar consistency. Also to use Vital Stim.

I’m looking for input on next steps in the home health setting. Is it worth it to discuss Frazier Free Water protocol with Mom? One consideration is he had a croup attack 2 months ago unexpectedly.

ANSWER: 

So glad you reached out. Lots of thoughts and questions as I read your post. Know that the questions and “thinking out loud’ are part of my clinical problem-solving, to sort out relevant considerations and complete differential as I go along. Just lots of questions and weighing of possibilities to start with. Usually, children with complex co-morbidities have multiple relevant components to their care to sort out.

“Poorer results than the original study” in this child’s situation, based on what we you have shared, could be the result of several possibilities.

Not sure how long ago the previous study was or the results, but the previous study may be part of the relevant picture: the analysis of that study might not have incorporated all the data or a bigger picture so the “results’ were precarious; the study was short or data was tenuous and conclusions were therefore tenuous; the etiology for the whatever adverse events were seen was not clear (or not made clear in the report) and perhaps, if it were,  would have given more information that might make sense now with newer data; physiology was not described, which would have provided more data than just what events of aspiration or laryngeal penetration were witnessed – remember Bonnie Martin Harris has told us that “aspiration or penetration is neither sufficient or necessary for a swallowing impairment”, so physiology becomes the key in our analysis; the study is always a moment in time and so we may not witness events that are indeed occurring during true meals.

A second relevant factor to consider is his neuromotor problems with a diagnosis of CP. While CP is not progressive, increasingly complex functional skills (including feeding) can sometimes look worse and become more challenging as time goes on, due to the demands on an already altered sensory-motor system to integrate for increasingly complex tasks over time.

A third relevant factor to consider as you reflect, is that children with CP often have related co-morbidities. We don’t know what his are from your description, but they can often include respiratory and GI, whose integrity may wax and wane, and therefore be fluid in their influence, pending for example the season of the year (e.g., winter can bring more respiratory challenges, spring can bring allergy-like factors in to play) , growth spurts, minimal changes in diet content that may seem at first glance as minimal, changes in activity. This can lead to subtle respiratory changes, subtle GI changes,  that in a dynamic system like the swallow, can influence function from moment to moment. The croup, which may have been part of an URI provoked by airway invasion from above or below, is worrisome.

Can you connect with the SLP who did the study and perhaps look at it together? It might suggest some added interventions that were or were not objectified, though likely were, such as: rate of intake, bolus size, cup utilized (there are so many and some work better for some children for safety), pacing, self-drinking versus fluids offered by caregivers, position and support/stability offered to optimize proximal and distal stability (seating device and support for the procedure can alter physiology in a good way or an adverse way).

Regarding a free water protocol, is he staying hydrated with the thickened liquids? Is he willing to drink them? Has his fluid intake gone down since thickening was started? Does he receive good oral care on a regular basis? What has his pulmonary health been like over time? can family carry it  over safely? Doesn’t sound indicated with what we know.

I hope this was helpful to get you thinking. It’s ok to live in the gray zone and not know these answers. Just thinking about them is part of the problem-solving process.

Looking Ahead to 2022

I am pleased  to announce my On-Site Seminar Schedule for 2022!  I’ll keep you posted about  added dates/locations, any virtual offerings and  when registration opens.

Feb 2022      Houston, Texas

Feb 3-4            The Early Feeding Skills Assessment Tool : A Guide to Cue-based Feeding in the NICU

Feb 5-6            Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                       Practice Challenges

Feb 7               Pediatric Videofluoroscopic Swallow Studies: From Physiology to Analysis

April 2022       Orange, California

April 15-16       Pediatric Swallowing and Feeding: The Essentials

April 17            Pediatric Videofluoroscopic Swallow Studies: From Physiology to Analysis

April 18-19       NICU Swallowing and Feeding: In the Nursery and After Discharge

May 2022        Chicago, Illinois Area (Winfield, Illinois)

May 13-14       Pediatric Swallowing and Feeding: The Essentials

May 15-16       Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                     Practice Challenges

June 2022       Phoenix, Arizona

June 24-25      NICU Swallowing and Feeding: In the Nursery and After Discharge

June 26           Pediatric Videofluoroscopic Swallow Studies: From Physiology to Analysis

June 27-28      Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                      Practice Challenges

Aug 2022        Atlanta, Georgia

Aug 18-19       Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                      Practice Challenges

Aug 20-21       The Early Feeding Skills Assessment Tool : A Guide to Cue-based Feeding in the NICU

Sept 2022      Chicago, Illinois

Sept 16-17      NICU Swallowing and Feeding: In the Nursery and After Discharge

Sept 18-19      Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                       Practice Challenges

Sept 20            Pediatric Videofluoroscopic Swallow Studies: From Physiology to Analysis

Oct 2022          Austin Texas

Oct 22-23        The Early Feeding Skills Assessment Tool : A Guide to Cue-based Feeding in the NICU

Oct 24             Pediatric Videofluoroscopic Swallow Studies: From Physiology to Analysis

Oct 25-26        Advanced Infant/Pediatric Dysphagia: Problem-Solving Complex Patients and                                       Practice Challenges

Problem-Solving: Two year old with Neuroblastoma and G-Tube

QUESTION:

I work with a child who is  two years old, and was diagnosed in October 2020 with neuroblastoma. She is fed through both a g-tube and by mouth minimally. Generally healthy. She completed chemotherapy at in April 2021. She began immunotherapy and will receive treatments one week per month (M,W,F).

Mom reports there was a never a concern for a true “swallow disorder” in regard to risk for pneumonia or ever a need for an instrumental swallow study. Mom reports that after her child was diagnosed with Neuroblastoma, the medical team considered an SLP to evaluate her swallowing due to an oral pocketing, lack of appetite and coughing concern; however, she was seen 1-2x by the inpatient SLP who deemed her “OK” and “fine” to eat, and “no need for instrumental”.

Per mom report, she was told that the feeding issue was behavioral/sensory, and that for nutritional / hydrational reasons, she received an NG tube, then a G-Tube was placed (end of November). Mom reports that she was told that her child can technically come off the G-Tube but since she wasn’t eating enough eating enough, it will remain placed.

Mom reports that now her child is being fed mostly through GTube and “not much” orally; reports approximately  2 spoons yogurt, OR 10 cheerios, OR dry cereal, nibble 1 bite of noodle, 1 bite of a freeze pop; mom reports that when she sees her siblings eat, she desires it, yet once given, she will throw it away.

I saw the child today; she ate 3 spoons of chocolate yogurt with no problem, 1/2 chip with functional oral skills and no overt issues. Mom then brought her favorite food: chickpeas (spicy flavor), the child ate about 10 pieces, then picked the last piece out of her mouth, gagged, burped, and proceeded to vomit a large amount of orange secretions. Given a sip of water, she began coughing.

When questioned, mom reports that this happens often with certain foods (“even the non-spicy chickpeas“), however they don’t always see it because she “hardly eats”. I recommended perhaps a GI consult and/or follow up with hospital SLP to consider instrumental exam.

 

ANSWER:

It is challenging when the infant’s/child’s history is provided solely by the parents. They may recall information incorrectly, forget critical details that would assist you, misinterpret what was said or what transpired, or perhaps have focused only on part of what they heard that might have been more readily understood or accepted at that time. On the inpatient side, especially after a critical diagnosis of neuroblastoma, the aftershock and the stages of grief set in for parents. They have told me it is like a fog sets in, it’s hard to remember what you heard, and it’s scary. During that time, information processing is very much affected by the stage of grieving they are in, the acuity of infant’s child’s medical situation, the early progress during inpatient stay and the multitude of consultants that come in and out of their daily lives, as they stay at the hospital, who touch them and their child each day. I see it first had as I am in the room with a family and an infant/child, a physician comes in to examine and update their differential and the talks with the family. Or the team does morning Rounds. It can be overwhelming for parents but intended to be so helpful. Everyone is typically thoughtful, and share a lot of crucial information, answer questions, listen. One parent might not be there due to being at work for example and gets the information second hand from a family member. After the physician leaves, the reprocessing often begins as the parent wonders aloud and then “digests” what actually transpired or what they heard through weary ears. Add this to the critical decisions made by the team and asked of the families when they are under emotional stress. I wonder sometimes how the families get up each day and come back so kind, so thoughtful, and so caring, yet completely drained so much of the time.  It is within this context that they then store and late recall for you on the community/OP side, the important information.

It is possible that the SLP did have concerns about swallowing safety, which would be likely given the diagnosis. The SLP may indeed have expressed this concern, and the team decided otherwise, which can happen.  The parent may have found the SLP’s concern about swallowing surprising and kindly with respect disregarded it. It is hard for parents with a sick child to think now even eating and drinking m might also be a problem and the child might “lose” that as well. Sounds like interim pleasure feeding trials might have been recommended or perhaps there was a plan to complete an instrumental assessment, and, for multiple reasons, it was cancelled and there was a plan to follow-up with OP study. Possibly mucositis r/t chemo was apart of the decision. So many possibilities. This is not to say that as inpatient SLPs we don’t look back and say “hmm, I wish I would have…”  or “I wonder if I had…”  That is a part of doing your best to minimize risk and improving one’s practice, thoughtfully reflecting on how we can do better. Without that SLPs input, we just don’t know what unfolded.

Perhaps ask Mother for a release of records for SLP services during IP stay and get her authorization to contact the SLP staff directly and speak with the SLP who cared for this child, to get that SLPs perspective and objective data. That will hopefully bridge the gap for Mother and for the child and for your planning your next steps.

Thanks for reaching out. We are all part of a big team that continues beyond the walls of the hospital, to support each other.

Research: Disruptions in the development of feeding for infants with congenital heart disease

Jones CE, Desai H, Fogel JL, et al  (2020). Disruptions in the development of feeding for infants with congenital heart disease. Cardiology in the Young, 1-8

This just published manuscript is a valuable resource for therapists supporting feeding/swallowing for infants with CHD.  The authors include in the-trenches pediatric therapists from leading programs across the US. It will inform your practice,  whether you are in the hospital, Early Intervention  or community programs that support these complex infants.

The introduction:

Congenital heart disease (CHD) is the most common birth defect for infants born in the United
States, with approximately 36,000 affected infants born annually. While mortality rates for
children with CHD have significantly declined, there is a growing population of individuals with
CHD living into adulthood prompting the need to optimize long-term development and quality
of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental
challenges and feeding difficulties. Feeding challenges carry profound implications for the quality
of life for individuals with CHD and their families as they impact short- and long-term neurodevelopment related to growth and nutrition, sensory regulation, and social-emotional
bonding with parents and other caregivers. Oral feeding challenges in children with CHD
are often the result of medical complications, delayed transition to oral feeding, reduced stamina,
oral feeding refusal, developmental delay, and consequences of the overwhelming intensive
care unit (ICU) environment. This article aims to characterize the disruptions in feeding
development for infants with CHD and describe neurodevelopmental factors that may contribute
to short- and long-term oral feeding difficulties. 

They discuss the impact of: cardiac physiology, necrotizing enterocolitis, gastroesophageal reflux, timing of cardiac surgical interventions, sedation and medication, chylous pleural effusion, respiratory support, neurodevelopment, genetic syndromes, a noxious feeding environment, nerve paralysis/paresis, and dysphagia. They then discuss the consequences of these feeding challenges, including: nutritional interference, breastfeeding difficulty, tube feeding, oral aversion, and finally long-term feeding outcomes.

 

Problem-Solving: A Feeding “Window” for NICU Infants?

QUESTION:

There is this idea of a feeding “window” for the infants in our NICU, where PO trials ideally need to happen within this “window” or there could be longer-term feeding issues.  This idea is perpetuated by nurses, physicians, and our developmental care specialist but as an SLP I am not only puzzled but can’t find any research refuting or supporting it. I think the way in which its used by other staff is that this “window” exists around 40-43 weeks and that it is important that if PO hasn’t already happened, that trials at least need to happen during this timeframe.

Does anyone have any research for or against this “window”? Or know the origin of this idea?

ANSWER:

Unfortunately, today many of our preterm infants are being asked to feed much earlier/younger and that can readily cause more stress, unless the approach is infant-guided and not volume-driven. Today, the pressure to get infants out of the NICU often drives many care decisions, especially when it comes to PO feeding.

It’s not uncommon for neonatologists to assume that there is a window within which our preterms must “experience” PO feeding or they will “miss that critical window and never learn”. There needs to be reconsideration of that paradigm to consider instead, individualized readiness to PO. This is why.

That well-intentioned paradigm is based on writings from Gesell back in the 60s that talked about a “critical window” for learning to eat. Those times were different in many ways,  as was the population being described. NICUs were just being developed, there were no therapists as part of the neonatal team, as the need for therapy support, much less feeding support, was not well understood. Many NICU infants did not survive or did so back then with enduring developmental concerns. NICU  infants, though they weren’t asked to PO feed as early back then, they eventfully were PO fed. Prior to initiating  PO, the infants did not have developmental support for the system-based underpinnings to support that future PO feeding and avert maladaptive sensory, sensory-motor and oral-motor patterns that often evolved. At that same time community in Early Intervention, and even in the early 80s when I first started out, we rarely saw former  preemies who had survived the NICU until they were often 4 or 5 years old. Can you even imagine? And they came with horrific stories back then, and complex maladaptive behaviors. The fragile marginal subsystems that underpinned PO feeding had been dormant all that time, and the infants developed maladaptations from motor learning environments that were not therapeutic;  but the nurses in the NICU had done the best they could without therapeutic collaboration/insights, and then parents, after discharge, did the best they could without support of therapists. You can see how “not missing a window” might have been seen as the key, to avert such outcomes, when actually, it was the need to provide the right kind of environment to nurture the prerequisites, individualize care, and then further support emerging PO skills. That was then. This is now.

Today with the advent of neonatal interdisciplinary teams that include PT/OT and ST, we can better support readiness by maintaining those systems for future PO when co-morbidities safely permit. “Readiness” that is not determined based on an arbitrary date or age, but infant-guided readiness based on clinical signs/behaviors in the context of that unique infant’s GA (age at birth) and history/co-morbidities. That is the gestalt  that, when considered thoughtfully,  can set the stage for success, or, if not considered, create the perfect storm for risk. That gestalt benefits from neonatal care that is neuro-protective and promotes positive overcomes and recognizes safety issues inherent with some co-morbidities and clinical presentations that should suggest caution.

Concern for  “missing that critical window” has led perhaps to team decisions to PO with “let’s see what happens” or “let’s let him practice”. But as a thoughtful  nurse once said tome, “why do we ask them to PO when they are not ready? Practice doesn’t make perfect. Practice makes permanent.” I, of course, hugged her!

The concept that preterms must “experience” PO feeding or they will “miss that critical window and never learn” has led to the well-intentioned “pushing PO” and orders to PO on CPAP and HFNC. Many of our former preterms can learn to feed orally at later ages, once weaned in the level of respiratory support, and from my experience, do so with less stress and more safely. Amaizu (2008) reported that gestational age at birth (GA)  influences the ex utero development of oral feeding skills more than PMA (post-menstrual age) at which PO is started. So the age, i.e., PMA (post-menstrual age) at which you start to offer PO is not the key to focus on. It is the bigger picture, which means individualizing readiness considerations.

Advocating for safety for these infants is a critical one for SLPs in the NICU (and PICU). Current NICU technology has advanced to the point that more infants are surviving and yet many are requiring extended periods of CPAP and HFNC. Many extremely preterm infants in our NICU with CLD at post-term (41 weeks PMA +) remain dependent on CPAP or HFNC.  Sadly, this is often the group that gets the most “pressure” to feed and go home.  Does the team ask them to PO feed to not “miss a critical window”? Or does the team maintain their readiness with therapy support, to optimize safety and neuroprotection, by individualizing readiness?

Good collaborative conversations about the benefits of ST being involved to maintain a positive oral-sensory environment, promoting the oral-sensory-motor components that are the underpinnings for future PO feeding, beginning early to foreshadow for parents the swallowing, breathing and postural skills needed, and helping families also support those components, versus attempting PO feeding when the infant is struggling with respiratory stability. Clearly, medical co-morbidities predispose an infant in the NICU to PO feeding problems. Multiple papers have studied that. Those infants with the greatest respiratory comorbidities, often those born < 28 weeks’ gestation and BW < 1000 grams, are most likely to require prolonged NIPPV, CPAP and/or HFNC at those post-menstrual ages when PO feeding is typically attempted. Sick newborns may also present similar issues, secondary to their co-morbidities

If the infant has such respiratory needs that he requires CPAP, or a HFNC, one must ask if PO feeding is really a priority for that infant at that time. The ability to reconfigure the pharynx from a respiratory tract and back to an alimentary tract with precise timing and coordination surrounding each swallow is a concern. When we look objectively in radiology during an instrumental assessment of swallowing physiology, even infants with CLD stable on RA have altered or impaired swallowing physiology as a direct result of their CLD. The bolus mis-direction and resulting aspiration we often observe is typically silent. The need for an “urgent breath” often can predispose an infant with increased work of breathing to silently mis-direct the bolus into the airway during the swallow. The ability of the infant to close the glottis against the driving force of the respiratory support, while breathing with increased effort or with an increased respiratory rate, which effectively creates air hunger, and yet still maintain glottic closure throughout the duration of the swallow, would likely be precarious. Given the infant’s likelihood of baseline tachypnea and increased WOB, the dynamic adjustments of the airway surrounding the swallow are likely to be disrupted and create uncoupling of swallowing and breathing. Indeed, infants for whom we do not necessarily witness aspiration during a dynamic swallow study may indeed show alterations in swallowing physiology that may predispose them to airway invasion under “the right conditions” during PO feeding (changes in nipple flow, changes in position, changes in respiratory support or work of breathing at that moment, for example). The fact that NICU  infants “eat” and “are fed” and “transferred volume” does not equate to “safe or neuroprotective feeding”. Ferrara and colleagues (2017, 2020) and Ferguson (2015) have contributed greatly to our understanding of this risk.

We must of course remember the physiologic stress likely to occur when the infant experiences “feeding” when the infant is not “ready”. It is highly possible the stress of trying to breathe and coordinate a swallow may lay down neural pathways that move the infant away from wanting to eat, by wiring those sensory-motor pathways that lead to current and/or future maladaptive feeding behaviors. We know that studies looking at stress in preterms have shown an association with adverse changes in brain structure on MRIs.

In the NICU seminars I teach, this dilemma is always part of our problem-solving discussions. After 35 years as an NICU SLP,  I so appreciate and always advocate for our key role in dialoguing  with the team, problem-solving and focusing on safety and neuroprotection as the essential part of this practice issue which confronts every neonatal team.

I hope this is helpful.

Catherine

 

Amaizu, N., Shulman, R. J., Schanler, R. J., & Lau, C. (2008). Maturation of oral feeding skills in preterm infants. Acta Paediatrica97(1), 61-67.

Dumpa, V., Kamity, R., Ferrara, L., Akerman, M., & Hanna, N. (2020). The effects of oral feeding while on nasal continuous positive airway pressure (NCPAP) in preterm infants. Journal of Perinatology40(6), 909-915.

Ferguson, N. F., Estis, J., Evans, K., Dagenais, P. A., & VanHangehan, J. (2015). A Retrospective Examination of Prandial Aspiration in Preterm Infants. SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 24(4), 162-174.

Ferrara, L., Bidiwala, A., Sher, I., Pirzada, M., Barlev, D., Islam, S., … & Hanna, N. (2017). Effect of nasal continuous positive airway pressure on the pharyngeal swallow in neonates. Journal of Perinatology37(4), 398.