Problem-Solving: 4 y/o with trach CP

Question: We are currently seeing a 4 year 11-month-old female born at 31 weeks gestational age with an undiagnosed neuromuscular disorder. She presents with global developmental delay, chronic oxygen requirement (<0.5L at 21%), trach dependent with suctioning requirement 1-2x per hour orally and within the trach. This patient can tolerate wearing a PMV for greater than 60 minutes but no distinguishable difference in swallow safety or timing during MBS. She has global gross motor delays, can sit independently but unable to crawl or transition from lying to sitting. She has severe cognitive delays but does communicate with use of head nodding/shaking and signs within routine based activities.

Patient’s parent’s primary goal is for the patient to eat orally. She has been receiving speech therapy services targeting dysphagia including use of NMES, thermal tactile stimulation, jaw stability (kinesiotape), and oral trials of tastes (flavor spray and hard munchables with strong flavor with clearing and oral care by SLP) only. We have previously trialed: Large bolus size to increase sensation, strong flavors, use of assisted jaw closure and focus on labial closure. Patient’s spontaneous swallows range from 1-8 swallows within a 60-minute session. She silently aspirates consistently on MBS on all consistencies. Per result of MBS patient lacks velar engagement or elevation and has bolus movement into the nasal cavity during attempted initiation of swallows. She is also unable to maintain a labial seal.

Please provide any treatment ideas we have not considered. We appreciate your time.


Answer: What a difficult patient. I am happy to provide informal guidance that may assist you in your ultimate management plan.

At almost 5, her multiple co-morbidities reflect the severity of her dysphagia. So many pieces. You are trying, I can tell, to pull together any possible way to help meet the goal set by her family, that she be an oral feeder. The problem is that the goal is most likely not attainable for right now, and perhaps may never be, due to the severe level of impairment both overall and specific to her dysphagia. Let me try to explain why this is my impression.

Her postural control, based on what we know, is a fundamental component for her poor swallowing integrity. The poor stability and strength we see in her body is likely mirrored in her oral-pharyngeal mechanism.

I don’t think her palate problem (“lack of velar engagement or elevation”) is a “palate problem” per se but, given her clinical presentation, and the bigger picture, what was inadvertently perceived as “lack of velar engagement or elevation” reflects the nature of her swallowing impairment. I suspect that the “bolus movement into the nasal cavity during attempted initiation of swallows” most likely reflects passive retrograde flow into the nasopharynx, due to a severe delay in swallow initiation. The bolus is moving passively into the nasopharynx, just like it moves passively into the airway and is aspirated. This may be due to a combination of poor sensation, poor driving force of the tongue and poor driving force on the bolus anteriorly (poor lip seal described). Likely that her pharyngeal constrictors are also lax and contribute to bolus mis-direction to both the nasal and laryngeal airways – all associated with hypotonia. Given her described MA (severe cognitive delays), she likely lacks not only the postural but also the cortical neural underpinnings to be able to chew the hard munchables described. Her need for suctioning suggests she does not swallow her saliva, which is often associated with such a severe delay in swallow initiation and sensory-motor deficits as described. She requires a trach but it’s not clear how long it has been in place. It is clearly providing a current means of pulmonary toileting (suctioning) but may have been placed secondary to past need for ventilator support given her undiagnosed neuromuscular disease; she wears a PMV but has significant suctioning needs; this suggests she is not perceiving her secretions despite restoration of oral airflow by the PMV and is not swallowing her saliva.

Given this, I would suggest not offering her hard munchables, based on the impairments in her swallowing physiology, as she appears to lack the many prerequisites for chewing, so the hard munchables may be silently aspirated and/or obstruct her airway. While use of a larger bolus for increased sensation may be somewhat helpful under a different clinical situation, it may be problematic for her, given her hypotonia; she is likely to not sense that large bolus, too, and there is risk for it to move with gravity silently. Her poor jaw stability and lack of lip closure are both likely secondary to poor oral stability and oral hypotonia, so passive attempts at closure/approximation to swallow would be just that and won’t impact the underlying neuromotor components needed to swallow.

PT/OT are most critical interventions currently to build the postural base/framework to support swallowing of saliva as a starting point. You might work in co-therapy with them, while they are working on postural stability and support; you could provide deep pressure tactile input to the base of the tongue, onto into the biting surfaces of the teeth, offer a biter/teether to provide deep pressure input into the mandible (via the biting surfaces), deep pressure into the blade of the tongue to promote active tongue movement and driving force. An NDT trained SLP could guide you through this approach. I would also focus on tolerance of tooth brushing to promote optimal oral hygiene. Use of good oral care before any oral intervention is essential to reduce potential for bacteria laden oral secretions move into her lungs during therapy activities. Flavor spray on the biter/teether might be permitted but given her ongoing needs for flow (21% Fi02), the spray can mix with saliva and then be aspirated as well; check with her pulmonologist for guidance with this, as well as any tastes being offered. Because she is a known silent aspirator with multiple co-morbidities, with likely immunocompromise, even therapeutic tastes may not be appropriate. I would be having a conversation with her primary physician (and/or a key specialist like pulmonology) to ask for support in discussing with the family that PO feeding in the short term is very likely to place her at risk for re-hospitalization. Helping them understand the neural (cortical), postural, and sensory prerequisites will be helpful. A goal for them would be for her to swallow her saliva, as that suggests that the prerequisites for PO feeding trials are in closer reach.

These are such hard conversations to have, as families of children with such all-encompassing co-morbidities want their children to eat and we understand that deep longing. We never want to take their hope away and must give them guarded optimism, but at the same time be realistic and specific about what is within our clinical expertise to change at given points in the child’s developmental trajectory. Never hesitate to tell the family that it is hard for you to tell them what you must, and that you are not giving up on their child but also must assure that everyone is on the same page about what will help now and focus on the “now”.

You are thoughtful and kind, and the family is fortunate to have you in their corner.

I hope this is helpful.


Research Corner: Supporting Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease

Supporting Optimal Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease

Peterson, Jennifer K. “Supporting Optimal Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease.” Critical Care Nurse 38, no. 3 (2018): 75-79.

Our fragile infants and children with congenital heart disease are at risk for adverse developmental outcomes across multiple domains, including feeding/swallowing. This just-published article speaks to critical interventions, among them, cue-based feeding.


Improved survival has led to increased recognition of developmental delays in infants and children with congenital heart disease. Risk factors for developmental delays in congenital heart disease survivors may not be modifiable; therefore, it is important that lifesaving, high-technology critical care interventions be combined with nursing interventions that are also developmentally supportive. Implementing developmental care in a pediatric cardiac intensive care unit requires change implementation strategies and widespread support from all levels of health care professionals. This manuscript reviews developmentally supportive interventions such as massage, developmentally supportive positioning, kangaroo care, cue-based feeding, effective pain/anxiety management, and procedural preparation and identifies strategies to implement developmentally supportive interventions in the care of infants and children with congenital heart disease. Improving developmental support for these infants and children at high risk for developmental delay may improve their outcomes and help promote family-centered care.

Read more:

Research Corner: Therapy Usage in the NICU

Therapy Usage in the NICU

Ross, K., Heiny, E., Conner, S., Spener, P., & Pineda, R. (2017). Occupational therapy, physical therapy and speech-language pathology in the neonatal intensive care unit: Patterns of therapy usage in a level IV NICU. Research in developmental disabilities, 64, 108-117.

This article by Bobbi Pineda OTR and her colleagues provides valuable information about utilization of therapy services in a large NICU. It provides insight into referral patterns and supports the concept of early and continued therapy services throughout the NICU stay to optimize outcomes. While their findings are not necessarily generalizable to other NICUs, this is the first attempt to gather such data.

It is worrisome to me that for those NICUs in which SLPs support feeding, referrals are often not received until > 36 weeks PMA. By that time, many of our fragile preterms (with complex co-morbidities) have already struggled learning to feed and may be referred at that time for extra support to “fix them”. In NICUs where PT/OT support feeding, they are typically already following the infants when feeding readiness is a focus, so for those infants whose team is likely to require extra support for feeding, it is already in place. My hope is that there will be greater recognition of the importance of early additional feeding support to the team for those preterm infants at the highest risk for enduring feeding problems, as profiled in the literature. The complex nature of their poor feeding often requires a team approach to avoid maladaptive behaviors and airway invasion. More research is needed to explore this concept and articulate infant needs for support related to co-morbidities.

Research Corner: Tube Fed Children….Management, Weaning and Emotional Considerations

Tube Fed Children: Management, Weaning and Emotional Considerations

Edwards, S., Davis, A. M., Bruce, A., Mousa, H., Lyman, B., Cocjin, J., … & Hyman, P. (2016). Caring for tube-fed children: a review of management, tube weaning, and emotional considerations. Journal of Parenteral and Enteral Nutrition, 40(5), 616-622.

Working with our infants and children who are tube fed can be challenging. This more recent article by a well-respected interdisciplinary team highlights some key perspectives and current data that can inform your therapy practice. Hope you enjoy it as much as I did.


Research Corner: Feeding Problems from the Parents’ Perspective

Feeding Problems from the Parents’ Perspective

Estrem, H. H., Pados, B. F., Thoyre, S., Knafl, K., McComish, C., & Park, J. (2016). Concept of pediatric feeding problems from the parent perspective. MCN: The American Journal of Maternal/Child Nursing, 41(4), 212-220.

Wanted to share this recent article that so well captures the importance of the family as the most important part of our therapy with their child. As the authors state: “A child and their family have a feeding problem; they experience this journey together. It is more inclusive to consider this issue in the context of the child’s natural environment with the people who are most familiar and invested. A shared conceptualization that families can relate to (without perceived stigma), and that providers could use to classify pediatric feeding problems, would improve potential for early feeding assessment, referral, and for feeding intervention efficacy to last long term.”

Research Corner: Brain Oriented Care in the NICU

Brain Oriented Care in the NICU 

I wanted to share with those of you who are part of an NICU team or provide services for NICU graduates an article that, while 4 years old, is still so applicable as we support change from a volume-driven to an infant-guided feeding culture in the NICU. Those of you have an interest in neuroprotection for fragile adults will also find it interesting.

Bader, L. (2014) Brain-Oriented Care in the NICU: A Case Study. Neonatal Network Sept/Oct 2014, 263-267

Brain-oriented care, or neuroprotection, is often thought of as “new” to the NICU, yet as the author states, neuroprotection encompasses all the interventions that promote development of the brain. Because our NICU infants are wiring their brains outside the womb, every experience matters. Especially when it comes to feeding. The author makes the connection to infant-guided feeding, an approach we all need to advocate minimizing the physiologic stress associated with learning to feed in the NICU, and indeed after discharge. Unfortunately, the physiologic stress that many NICU infants experience when fed using a volume-driven approach instead, can wire the brain away from feeding. The feeding outcomes of NICU infants, which are poor, make it imperative that we be a part of the change in our NICUs to listen to the infant’s communication and provide the relationship-based care, especially with feeding, that allows the preterm infant’s brain to wire in an adaptive not a maladaptive way.

I hope you find this informative.


Problem Solving: Feeding Readiness in the NICU

Question: Non-nutritive oral motor therapy in NICU – when do you use it and why and what result do you see? As a warm up to oral feeding to help organize? In 30-32 weekers to prepare for oral feeding? In patients who would be nil by mouth for an extended time? Patients who are not able to feed orally due to severe aversion (usually due to gastro issues)? What is the latest research on this? I’ve read articles for and against.

Answer: A few thoughts for you. I don’t conceptualize what I think you are describing as oral motor but rather “feeding readiness”, which encompasses a different concept, a much broader, yet more defined, infant-guided approach in the context of the preterm’s unique co-morbidities.

Conceptualizing the feeding-related services we provide in the NICU as “feeding readiness” and “supporting safe/functional PO feeding” can help neonatal nurses and neonatologists better understand the value we add to the NICU team. Unfortunately, well-intentioned but stressful cares and/or feedings may wire the infant’s brain away from eating, and indeed lead to later feeding aversions. The literature on feeding outcomes in former preterms includes reflections on the high percentage of former preemies with enduring feeding problems, far beyond the NICU. It impacts the infant-parent relationship and multiple domains.

I would avoid “oral-motor work” designed to focus on oral-motor skills per se at this juncture as it would be too invasive and not appropriate. You are describing preterms who are both fragile and still many weeks prior to term. Were they not born too soon, they would be fetuses experiencing motor learning and oral-motor learning in utero; their oral-motor movement patterns would be evolving in the context of the containment provided by the uterus, with hands on their face and in their mouth (and alternating touching the placenta per research). Careful attention must be paid to physiologic stability, especially its impact on WOB and RR., during all infant-guided readiness experiences Progression to pacifier offered via rooting response for sucking with co-regulated pacing, f/b tiny droplets of EBM on a pacifier offered via rooting response for purposeful swallows They would be integrating their structurally-intact aero-digestive system by 17 weeks of life, swallowing several ounces of amniotic fluid each day.

Focus on structuring experiences outside of the uterus that most closely align with the ideal sensory-motor environment (intrauterine)and help caregivers embrace the critical impact this intervention can have if offered in a neuroprotective infant-guided way.

Also, know that in addition the benefits of mother’s milk (EBM) to the mucosa via tiny trace droplets that may promote purposeful swallows and oral-sensory-motor mapping is being considered by many NICUs as an early approach to supporting readiness for infant-guided feeding in the future prime the sensory-motor system along with nuzzling at the breast (kangaroo mother care). There is a very tiny “paintbrush” one of the reps has (sorry I cannot recall which) that can support a very gentle limited offering of MBM to the lips or this could be offered via very gentle well-graded touch. But one can do this with gentle infant-guided touch via a caregiver’s gloved finger as well.

The key is that any feeding readiness experiences should be offered when infant is at his best respiratory wise (both in terms of respiratory support being required and his WOB and RR), he is actively engaged and maintains physiologic stability, and should be offered using infant-guided principles of interaction. Resting the infant and use of co-regulated pacing to assure that respiratory stability is fostered from moment to moment, are essential to support a neuro-protective experience that promotes both safety and positive learning. Some NICU caregivers offering EBM may need guidance to view this experience in such a light, as opposed to a “task” that one “must complete as a part of cares” .
We recognize that, in the NICU, “practice” is not the key, but what is, is the experience, and how it is both offered and received by the immature emerging neuronal pathways and oral-sensory-motor system.

In the NICU, every experience matters, as I like to say. Practice in and of itself, only makes permanent the neuronal pathways that are recruited and mapped; it does not in and of itself create the pathways that underlie function or skill; it can unfortunately lead to maladaptive behavior and stress if done as a task and/or offered in a programmed way. Infant-guided experiences are essential to neuroprotection.

I teach these concepts and their underpinnings in my NICU seminar and cite relevant research, but I have yet to find anything published or researched specific to what I am describing, which provides the supported oral-sensory-motor learning I find so beneficial to our preterms. Its evolution is a part of my practice since 1985 in Level IV NICUs.
I hope this is helpful.



Research Corner: GER/EER in the NICU

Schurr, P., & Findlater, C. (2012). Neonatal Mythbusters: Evaluating the Evidence For and Against Pharmacologic and Nonpharmacologic Management of Gastroesophageal Reflux. Neonatal Network, 31(4), 229-241.

Reflux is a common issue in the NICU and with many of our pediatric patients. The evidence-base for effective interventions continues to  emerge related to preterm infants in the NICU. This paper by an NICU nurse published in 2012 is a fabulous resource. It does not just provide strategies but looks at the current evidence base as of its publication and explains so well the “whys” behind the interventions. It is so easy to join a bandwagon and support the latest idea but having the rationale and the data to titrate the interventions based on the unique issues and co-morbidities of a specific population, such as the NICU, is essential. It will inform your practice!