QUESTION: What slow flow sippy cups do you recommend?

CATHERINE’S FOLLOW-UP: Can you tell us more about the patient for who you are selecting the sippy cup? Since the cup is to be a therapeutic tool for the child, understanding the bigger picture is essential for targeting a cup that might be a potentially safe intervention.

THERAPSIST’S RESPONSE: Still on bottle, over 18 months, Down Syndrome dx. Silent aspiration across thin, 1/2 nectar, nectar so thickening not effective. Not a candidate for NMES due to pacemaker. Can extract from a straw but spits instead of swallowing. What are your slow flow sippy cup recommendations for him?

CATHERINE’S FOLLOW-UP: The question about any feeding tool (in this case, a slow flow sippy cup) cannot (or should not ??) reasonably be answered in isolation, i.e., outside the context of that patient, with the unique history, co-morbidities and data that provide the bigger picture, since no two children are alike. With the history provided (DS, with known silent aspiration) the question takes on new meaning. But the information from the swallow study that we know so far isn’t really helping to determine next steps by telling us only that “there was aspiration” —it’s like a doctor saying to a Mother who brings her child in for being sick, and is told by the doctor “Your child is sick, so we have to do what a sick child needs” and sending the Mother on her way–useless by itself. Please tell me more about this child’s bigger picture…when was the most recent swallow study? What did it tell us about swallow physiology and pathophysiology – i.e., why the aspiration occurred? What interventions were objectified in radiology? What were the responses to interventions trialed in terms of their impact on the pathophysiology (i.e., to suggest how they affect improve safety with that level of thickening)? Did they objectify purees or straw drinking during the VFSS with any specific utensils?

From multiple papers, we know that this population is at high risk for pharyngeal dysphagia and airway invasion—In this study —Jackson, A., Maybee, J., Moran, M. K., Wolter-Warmerdam, K., & Hickey, F. (2016). Clinical characteristics of dysphagia in children with Down syndrome. Dysphagia, 31, 663-671—-Of the 61 patients who aspirated, 90.2 % (n = 55) did so silently with no cough or overt clinical symptoms.so the objective data learned in radiology should help to protect the airway –especially since our clinical impressions can often be inaccurate according to research about clinical assessments. Given what we know about this child already —related to the precarious nature of his swallow, we would need to very cautious clinically and be sure to use what objective data we already have to guide us. It’s possible you did not get any more detail in the swallow study report, and that has tied your hands. If so, then perhaps follow-up with parent permission with the evaluating SLP at the hospital for that needed data. This child is quite complex, and it’s good that you are asking about options and suggestions. I suspect there must be some form of augmentative feeding available — so take time to think this through to minimize risks for him, and for you as well, in this process. Always here to problem-solve further.

Think along with me, through this dialogue, as we peel apart the pieces of this clinical puzzle…

QUESTION: Looking for cup suggestions for a 13 month old with History of unilateral cleft lip and palate repairs completed at 4 mos. and 11 mos. of age. Currently takes in all liquids via bottle, Dr. Brown’s level 4 nipple (no one-way valve needed). Have tired honey bear, reflo, the first year, replay, Dr. Brown’s sippy spout bottle, Nuby silicone cup, munchkin transition sippy cup, Chicco transition cup, NUK hard spout sippy cup, and just an open cup.

The issue is liquid comes out too fast or with a too great of volume. Pt will cough or just spit out the liquid. We have tried regulating the amount and thicker liquids. He can swallow if liquid is regulated in that way. Any suggestions?

CATHERINE’S FOLLOW-UP: Is this an isolated cleft in a child otherwise normally developing, without co-morbidities? That helps sort out possible reasons for what you are seeing clinically and possible next steps and interventions.

THERAPIST’S RESPONSE: correct isolated cleft. Toy ally developing and hitting milestones otherwise.

CATHERINE’S FOLLOW-UP: What is his previous experience with liquids since birth? Purées? I ask because every surgeon has different restrictions pre/post op. Wondering if this is experiential, combined with decreased motor learning, maybe with some sensory preferences within the typical range — or perhaps outside the typical range??

THERAPIST’S RESPONSE: Feeding tube for 24 hours after birth. Dr. Brown’s bottle with specialty valve insert until 4 weeks ago. Puree stated at 6 months of age, started feeding therapy to resolve immature swollen pattern, anterior spillage and poor tongue lateralization. Was able to take bottles after each repair. Post-palate repair able to eat puree with no issues. Continued exposure to different textures. Can self-feed following BLW approach. Eats Cheerios/puffs lien a champ. Reducing bolus size when offered large item (like sheet of graham cracker) still developing. I’m thinking it is experiential and sensory. He uses his finger to complete lateral sweeps and pick up anterior spillage. We don’t know what nerve sensation he has in his mouth. He is still cutting teeth. PCP wants him transitioning off bottles soon. Just can’t seem to find a cup that has a reduced enough flow to even give him experience with drinking out of something other than a bottle.

CATHERINE’S FOLLOW-UP: It’s uncommon that with an isolated cleft one would see anterior spillage and poor tongue lateralization, the need for caregiver to break graham cracker sheet into smaller pieces, and the need for finger for lateral sweeps still —-especially with such opportunities as you describe, and BLW along the way. Those differences, combined with no success with multiple utensil trials makes me wonder if there are some differences in lingual integrity that underpins tongue-palate seal, lingual thinning and cupping, decreased intrinsic lingual muscle ROM for lateral shifting…wonder if perhaps a tongue tie? My colleague Laura Brooks from Children’s Healthcare of Atlanta published an article that suggests a potential correlation between altered swallowing physiology and restricted BOT secondary to posterior tongue tie. I wonder if that is relevant to this clinical presentation. It may not be.

Brooks, L., Landry, A., Deshpande, A., Marchica, C., Cooley, A., & Raol, N. (2020). Posterior tongue tie, base of tongue movement, and pharyngeal dysphagia: what is the connection?. Dysphagia, 35(1), 129-132.

Can you tell me more about those oral-sensory-motor components —- I wonder if we figure out the “why” and then focus on a cup that averts the resulting coughing or anterior spillage You’ve tried so many cups , wisely so, and the child also has trouble with chewing except with essentially meltable items… I don’t think it’s the cup– it’s what the child brings to the task, or what he might not yet have learned…. Something is missing in this puzzle. Sounds like the nature of his challenges point away from just “experience”, and perhaps both sensory and motor pieces. It’s not typical to experience loss of nerve function related to cleft repair. Thanks for all the detail as we think this through, and for your clinical wisdom, not typical of an “isolated cleft”. Sorry for so many questions but my they help me sort it all out.

CATHERINE’S FOLLOW-UP COMMENTS…  Not sure about the outcome for this child as there wasn’t further conversation, but the key take away…It typically isn’t about the utensil but the bigger picture. Peeling apart the multiple pieces, slowly and methodically, is the way we arrive at “the why” and what the next steps  might be for each unique infant or child with whom we are blessed to work.

Question

I’m an adult medical SLP and my coworker (who does peds) asked me about a pt and this isn’t my wheelhouse. Almost 5 year old without trouble swallowing. Was diagnosed with aerophagia. Has gulping sound with swallowing only when laying down and sleeping. Belches and farts a lot. Not a picky eater/does not avoid foods. Had a tongue tie clipped years ago. Closed mouth posture at rest, but pt chews with her mouth open and she is unable to perform tongue clicks. Pt had an EGD.

I told her to check for anatomy and recommend ENT. Could this be a posterior tongue tie thing? What else should we do or look for? They mentioned us (on the adult side) performing her VFSS because our c-arm is here. From quick search here, seems treatment is somewhat behavioral? But again this only happens when she sleeps or lays down flat.

Catherine’s Answer:

Is she otherwise normally developing? I wonder if there are any global sensory-motor issues that may be part of the differential. Is she followed by PT or OT? What is her articulation like? What did EGD show? Any clinical signs suggestive of EER/GER? The altered swallowing while recumbent or sleeping and aerophagia suggest potential GI issues may be part of her bigger picture.

Insights from a pediatric team will be essential. Multiple etiologies are possible for what you describe, so lost of questions need to answered. Gathering the data set would include: OT/PT to rule-out sensory-motor issues. A pediatric SLP experienced in feeding/swallowing could look from multiple perspectives. The, based on that data set and the team’s impressions, potentially a bodyworker consult and/or myofunctional therapy consult. It’s possible that tethering, if it was present in the past, was not fully or correctly released years ago — could lead to the aerophagia commonly associated with TOTs. ENTs often disagree about whether TOTs even “exist”, and what constitutes tethering, so I find the above rehab-focused team can often look at function most effectively, once ENT weights in. But again tethering may no be part of the differential.

A VFSS may objectify alterations in swallowing physiology resulting from any tethering that may or may not be readily apparent. What you observed clinically is not uncommon in 5 years old with persistent TOTs, even post op. This article by one of my SLP friends/colleagues at Children’s Healthcare of Atlanta may be helpful –Brooks, L., Landry, A., Deshpande, A., Marchica, C., Cooley, A., & Raol, N. (2020). Posterior tongue tie, base of tongue movement, and pharyngeal dysphagia: what is the connection? Dysphagia, 35, 129-132. Another resource is Functional Assessment and Remediation of TOTs by Lori Overland and Robyn Merkel-Walsh, MA, CCC-SLP. Know that what you have observed clinically may be unrelated to any tethering. But there are possible implications of tethered oral tissues for the hyolaryngeal network, for motor learning and for the postural network — which underpin and therefore can affect all functional components of feeding/swallowing. Know there is controversy about tethered oral tissues across all disciplines; all perspectives should be valued. A good differential by a pediatric team will help sort this out and optimize function.

QUESTION: What is the typical time for follow-up VFSS for discharged NICU baby who is on thickened feedings? Our team has been recommending 6 to 8 weeks following VFSS. We are finding that there is some improvement at 6 weeks but not enough to change formula thickness.

CATHERINE’S ANSWER:

Because I find every infant is unique, we don’t utilize an arbitrary time frame, but instead determine that with the gestalt of each patient, and then discuss with the team.

Considerations I use include: infant’s history and co-occurring comorbidities, etiology(ies), nature of pathophysiology, how precarious swallowing appears even with thickening, complexity of interventions required to establish safe swallow, anticipated compliance with interventions post-discharge.

For example, a former 24 weeker with slowly resolving CLD, discharged on oxygen with laryngomalacia with the same swallowing pathophysiology as an infant born at 37 weeks IDM would most likely have a repeat VFSS earlier and have post-discharge surveillance more frequently. Ideally, we want to allow enough time for resolution of the etiology or the factors that underpin the swallowing pathophysiology, but not too much time —so that too must be tempered with risk-benefit of prolonged thickening, radiation exposure and how safety may change overtime, both for the better or the worse, depending on the infant and the bigger picture. It’s the art and science of what we do.

In re-assessing potential changes in swallowing physiology in the repeat VFSS, we may not be able to wean thickening based on new data. The data we gather will hopefully better guide interventions that would be occurring aside from thickening, and allow us to objectify potential new interventions and their impact. Re-objectifying physiology in a VFSS allows us to gather objective data on the impact of weaning thickener on physiology itself,  avoiding a narrow focus on only aspiration. It should help optimize the risk-benefit ratio inherent in our clinical decision-making, especially for our most fragile feeders.

Rather than having an arbitrary time frame, consider recommendations that are patient specific based on the domains above. As I always like to say, “in the NICU, co-morbidities matter”.  That applies to this question as well. So perhaps collect data for the team that may yield “co-morbidity-based” time frames that could be your soft “guidelines” — with the understanding that the final recommendation will be infant-specific.  Again, it’s the art and science of what we do and part of the value we bring to the NICU team.

If I were to average the data over many years of practice, I suspect the repeat studies post-discharge from the NICU tend to be between 6-8 weeks post discharge. I hope this provides some food for thought.

Question: Our health care system is looking at the pros/cons of administering maternal breast milk swabs vs drops via syringe to early preemies and other infants who are intubated. I am aware that the use of syringe is recommended for initial colostrum, but I question if this is a safe practice beyond that phase. Our feeding educators and micro-preemie champions feel that best practice is to administer swabs vs syringe, which is difficult to control. I would appreciate your thoughts and references on this matter.

Catherine’s Answer: The benefits of EBM from the first moments of extrauterine life have been well-documented. That said, some of the applications of this concept are somewhat worrisome and need to be grounded by our understanding of swallowing physiology, its emergence in the setting of prematurity, the impact of an ETT and the co-morbidities that co-occur for preterms and sick newborns who require neonatal intensive care. I have seen commentary from a therapist on social media saying, ” We start as young as 24 weeks. 0.2 mL”    While we know the fetus at 24 weeks of life is swallowing amniotic fluid for motor learning in the intrauterine environment, the extrauterine environment cannot provide the same underpinnings when a caregiver delivers fluid, even with the best of developmentally supportive infant-guided care. 

The complex and precarious nature of the swallow-breathe interface in these fragile infants is not always fully understood, so the need to pause and fully consider the risk-benefit ratio for such an intervention at that particular time in the infant’s recovery may not be fully appreciated. If there is an ETT in situ, then it may act, as our ENTs say, as a potential conduit for the milk drops (and EER/LPR for example) to invade the airway, silently or symptomatically. I would suspect that syringe delivery of a bolus would pose a greater risk, but no one to my knowledge has studied that question.

That does not mean pacifier dips or milk drops aren’t a valuable intervention, but timing and readiness are key considerations for any intervention available to us. I use it often in the NICU to promote both neuroprotection, motor learning for swallowing (often truncated by limited intrauterine learning secondary to preterm birth) and underpinnings for future PO attempts (so incorporate organized root-to-latch sequence, resting, and co-regulated pacing). Even for sick newborns with co-morbidities that predispose then to feeding/swallowing problems, this has clinically appeared to be quite helpful for the infant and as a learning process (via guided participation) for families in preparation for offering an infant-guided approach to PO feeding. 

I hope this was helpful. As we both know, there are rarely black and white answers to our clinical questions. They require thoughtful deliberation and critical thinking to minimize risk for these most fragile of our patients.

QUESTION:

I am an adult acute care SLP. My hospital has an accredited NICU that is fairly busy. We have NICU trained PT’s that work w/ the babies but currently no SLP. An SLP who no longer works in our hospital used to service this population. I am wondering what type of credentials an SLP is required to have to service this population (NICU)? Any specific course and training required? I am inquiring about this for future candidates when interviewing. What training is an absolute “must-have” before an SLP can work with these critical babies? Thank you for any information you can share. From reading this SIG, I know many of you have this area of expertise.

CATHERINE’S ANSWER:

Working as a speech-language pathologist in the neonatal intensive care unit (NICU) requires many specific skills and advanced learning. These tiny patients and their families are fragile. The family-centered care we provide as SLPs, in support of neuroprotection, communication and safe feeding, create the foundation for a thriving parent-infant relationship. The NICU infant’s history and co-morbidities are often complex and require high-level problem-solving to keep them safe and to sort out all the pieces. It is a privilege to be a part of the NICU team, and it comes with much responsibility. The following are some of the elements of professional skill, expertise and that stand out to me as key for practicing in the NICU.

There are to my knowledge no agreed upon credentials for working with this fragile population, unfortunately. ASHA does have guidelines that you can take a look at. It reflects your thoughtfulness that you reached out to plan ahead for future interviews and hiring. I often receive e-mails asking for insights from adult SLPs working in a medical center, who have been “selected” to staff a new NICU. There are of course no black and white answers to your questions. And we all have to start somewhere. And no one knows everything. It would be no different if tomorrow I were asked to work in adult ICU at the very large medical center in which I have work as a senior neonatal/pediatric swallowing specialist. I could technically treat adults in ICU because it is in our scope of practice as SLPs, but it would be ill-advised, unfair to the patient and family and likely place me in a potentially litigious situation should something adverse happen based on my recommendations or lack of insight and would be clearly noted by an attorney or an expert witness. The risks all around would not be a good situation. But often inpatient pediatric specialists are asked to “cover” adult care when peds volumes are “down”. Each of us has a different perspective on risk and what is an acceptable risk for our patients and for ourselves.  Practice in the NICU is a subspecialty of pediatrics, and is to me the riskiest of all, as these are our most fragile patients.

Infants in the NICU are critically ill or were in the recent past. These most fragile patients can become physiologically unstable at any time-and it might happen during our therapy session. It’s not easy to practice in the NICU environment. Quick and constant losses and triumphs cause emotions to run high. An infant’s status can change at any time. Caregivers are highly skilled and passionate, which sometimes leads to strong opinions and respectful disagreements. The SLP needs to thoughtfully collaborate, yet at times take a stand. Another key trait: humility, and a passionate willingness to learn along with other disciplines. No one knows everything, or if they get to the point that they think they do, it is time to step away and retire. The NICU is too demanding in my opinion to be an initial independent placement after graduate school.

The NICU SLP requires advanced practice skills: It’s not just knowing what to do, but what not to do.  A large focus of our work is supporting feeding/swallowing, so the risk of compromising an infant’s airway is significant. Another essential skill: solid critical reflective thinking. As Drs. Evangelista, Blumenfeld and Coyle told us, “In our work as dysphagia practitioners, we’ve found that a combination of clinical experience and deliberate, effortful reflection on our own practice picks up where graduate school left off. This combination continues to serve an invaluable developmental purpose as we hone our clinical expertise in dysphagia.”

Another key element is solid mentored experience with progressively complex birth-to-3 patients, optimally in a setting which provides an interdisciplinary team approach with PT-OT-ST that supports families and each other as professionals, for a wide variety of infants ranging from very mild to complex feeding and swallowing problems and co-morbidities. It is so hard to access that kind of guided learning when an SLP has to be on the road so to speak and practice in a silo. It is hard to even conceptualize what you don’t know, and to not have someone to bounce questions off of in the moment or really “look” at an infant when you have only your own set of eyes, yet those eyes are still “learning”.

The right foundational pediatric environment will provide critical experience communicating with and supporting parents who are in various stages of grief. These stages of grief are experienced by families in EI even when the infant has never been in an NICU. It provides an opportunity for us as compassionate SLPs to listen, understand and learn how to support in ways that offer guarded optimism, and talk about difficult considerations that underpin airway protection. So that then, later in the NICU, when we work with families who nearly lost their infant, have an infant who is getting worse, or who is unsafe when PO feeding, we have some understanding of the thoughtful communication that is required. The communication from the infant, the child, and the family must always be the lens through which we problem-solve and intervene.

Another key element is the ability to complete a differential, and utilize broad, multi-system knowledge about preterm development and swallowing/feeding and complex medical co-morbidities that are common in the setting of an arduous medical course. This learning comes from multiple sources—previous birth-to-three mentored experience, previous complex patients prior to the NICU, on-going reading of the literature (not just within our field but also in medical, nursing and OT/PT journals) And then the NICU SLP must be ready and willing to not only understand the evidence base, but to bring it to the NICU team. Neonatologists and neonatal nurses will often ask “why?” and we must be able to discuss the research-based evidence along with our clinical wisdom. Ideally guided participation can be provided by learning along with a skilled NICU SLP to further support the critical thinking that is part of this “element” to look for during an interview.

Continuing education is essential because much of our learning about the NICU population comes after graduate school.  That means the hiring hospital must be dedicated to providing the support for education that will best avert sentinel events and optimize the risk-benefit ratio for the institution, the SLP, families, and most importantly, the infant. The courses should be functional, bring the current pertinent research, promote critical thinking not just information, and offer a deep dive across multiple components of assessment, intervention, and co-morbidities – because NICU SLPs will likely see many of them – often in a complex combination that will take patient problem-solving to peel apart. Underpinnings for (and aberrations of) feeding and swallowing in preterm and sick newborns are essential—WOB, state regulation, airway, postural control, sensory, GI, and neurodevelopment, and also the breadth of infant-guided interventions and their rationale in the NICU—-as they will all need to be a part of a differential and plan for safe swallowing. Also, the interaction of the evolution of swallowing physiology (unique to the impact of preterm delivery and/or critical illness for the term infant), airway protection and considerations for instrumental assessment (why, when, how, analysis and collaboration with the team). When I first started in the NICU in 1985, I was fortunate to come to this unique setting after 12 years of solid Birth-to-Three experience with complex infants and children, with wonderful mentors who helped hone my skills over many years.  Despite that, there were so many gaps, and starting in the NICU back then still required me to embrace being a lifelong learner and building a dynamic foundation. Even after many years of complex infant feeding and swallowing experiences (across outpatient, EI, acute care and NICU settings), I still have to pause and really think through these complex little ones, because every experience matters in the NICU. My continuing education offerings, especially my new Advanced Infant/Pediatric Dysphagia seminar are all infused with critical thinking. As Drs. Evangelista, Blumenfeld and Coyle told us, “In our work as dysphagia practitioners, we’ve found that a combination of clinical experience and deliberate, effortful reflection on our own practice picks up where graduate school left off. This combination continues to serve an invaluable developmental purpose as we hone our clinical expertise in dysphagia.” See: Evangelista, L., Blumenfeld, L., & Coyle, J. (2022). How Do We Cultivate Critical Thinking in Dysphagia Decision-Making? ASHA Leader Live.

I hope this is helpful. This relationship-based nature of our work in the NICU, and its potential to influence lives in so many ways, must remain as much a part of our day-to-day interactions with families, always inextricably linked to our critical thinking and problem-solving. As you can see, I am passionate about our work in the NICU, and the tiny humans we care for deserve no less.