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. Future directions state included relating impact of therapy services on long-term outcomes.
Here are some excellent resources for ankyloglossia. I am also attaching an article regarding why reflux is often an associated co-morbidity. These sites add to our understanding of posterior tongue tie, anterior tongue tie, as well as lip and cheek ties. Dr. Ghaheri has wonderful videos and pictures. I hope these resources inform your practice!
Assessment Tool for Lingual Frenulum Function developed by Alison Hazelbaker
Steehler, M. W., Steehler, M. K., & Harley, E. H. (2012). A retrospective review of frenotomy in neonates and infants with feeding difficulties. Int J Pediatr Otorhinolaryngol. doi: 10.1016/j.ijporl.2012.05.00
Just returned from teaching at Blythedale Children’s Hospital in Valhalla, NY. What an amazing program and staff they have, servicing a wide range of children from post-NICU through school age, with multiple complex co-morbidities. The pediatric therapists attending included those from Barcelona Spain and Australia, and we all appreciated the opportunity to problem-solve our patients and service delivery across settings. The grounds are beautiful and covered with animal topiaries that greet the children and their families. My colleague Theresa and I enjoyed their hospitality and the opportunity to share our passion for helping children with feeding and swallowing problems, and their families. Here we are in front of the hospital.
I have heard that rice cereal is not good to thicken with breast milk. Do you have research or articles we could use for a discussion with our neonatologists because they prefer we use it as they do not want commercial thickeners at all. We have discussed gel mix but they do not want us to use it. Any suggestions?
The many dieticians I have met have explained it to me as follows. It is the enzymes (such as Amylase, Lipase and Protease). The enzymes in breast milk serve a variety of functions, some of which we do not even know yet. Some enzymes are necessary for the function of the breasts and the production of breast milk, some enzymes help a baby with digestion, and some are essential a child’s development. Amylase is the main polysaccharide-digesting enzyme in MBM and it digests starch. So it averts binding of the MBM with rice cereal. Our MDs don’t allow commercial thickeners, either and gel mix is not approved by FDA for preterm in NICU. However some NICUs do.
Doesn’t leave a lot of options so one must look individually with the team at each infant, based on history, whether he can breastfeed (which is typically safer for most preterms unless there is a structural airway problem – and then breastfeeding not necessarily more protective). Depending on the etiology of the aspiration, plan will be different. Some infants may have a period of PO feeding formula (which has increased viscosity compared to MBM) or slightly thickened formula with rice cereal – not ideal ever, but may need to balance multiple factors and utilize as an interim plan related to likelihood of, and timing of, etiology for bolus mis-direction resolving.
One of my SLP colleagues was kind enough to share these excellent resources for those of us who work with infants and children S/P surgery for Congenital Heart Disease. Very informative for my practice.
Pediatric patients with congenital heart defects have their own set of challenges such as heavy amounts of sedation, bypass, pain from surgical incision, and weakness from recovery. A good resource is the National Pediatric Cardiology Quality Improvement Collaborative Website. This group is studying a specific cardiac population HLHS (Hypoplastic Left Heart Syndrome) but there are some good resources. Another website to look for information in regards to neurodevelopment specifically with congenital heart patients is the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) website. These two groups are looking at standard practices in regards to feeding and nutrition. Best practices sometimes come within your unit and your team. Find a physician champion, provide in-services to staff, develop protocols that promote safe and effective feeding practices for your patients. And try to get involved in small research studies or PDSA cycles, (Plan, Do, Study, Act) and share your experiences with other clinicians. Use the basics that you know about feeding safety but be creative with your feeding plans for families when feeding is so important to them.
Background: Deficits in swallowing physiology are a leading morbidity for infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliation. Despite the high prevalence of this condition, the underlying deficits that cause this post-operative impairment remain poorly understood.
Objective: Identify the physiologic correlates of dysphagia in infants with functional single ventricles and systemic outflow tract obstruction following stage 1 palliative surgery.
Methods: Postoperative fiberoptic laryngoscopies and videofluoroscopic swallow studies (VFSS) were conducted sequentially on infants with functional single ventricles following stage 1 palliative surgery. Infants were dichotomized as having normal or impaired laryngeal function based on laryngoscopy findings. VFSS were evaluated frame-by-frame using a scale that quantifies performance within 11 components of swallowing physiology. Physiologic attributes within each component were categorized as high functioning or low functioning based on their ability to support milk ingestion without bolus airway entry.
Results: Thirty-six infants (25 male) were included in the investigation. Twenty-four underwent the Norwood procedure and twelve underwent the Hybrid procedure. Low function physiologic patterns were observed within multiple swallowing components during the ingestion of thin barium as characterized by 4 sucks per swallow (36%), initiation of pharyngeal swallow below the level of the valleculae (83%), and incomplete late laryngeal vestibular closure (56%) at the height of the swallow. Swallowing deficits contributed to aspiration in 50% of infants. Although nectar thick liquids reduced the rate of aspiration (P 5 .006), aspiration rates remained high (27%). No differences in rates of penetration or aspiration were observed between infants with normal and impaired laryngeal function.
Conclusions: Deficits in swallowing physiology contribute to penetration and aspiration following stage 1 palliation among infants with normal and impaired laryngeal function. Although thickened liquids may improve airway protection for select infants, they may inhibit their ability to extract the bolus and meet nutritional needs.
McGrattan, K. E., McGhee, H., DeToma, A., Hill, E. G., Zyblewski, S. C., Lefton‐Greif, M., … & Martin‐Harris, B. (2017). Dysphagia in infants with single ventricle anatomy following stage 1 palliation: Physiologic correlates and response to treatment. Congenital Heart Disease.
Neonates undergoing heart surgery for CHD are at risk for postoperative gastrointestinal complications and aspiration events. There are limited data regarding the prevalence of aspiration after neonatal cardiothoracic surgery; thus, the effects of aspiration events on this patient population are not well understood. This retrospective chart review examined the prevalence and effects of aspiration among neonates who had undergone cardiac surgery at the time of their discharge.
This study examined the prevalence of aspiration among neonates who had undergone cardiac surgery. Demographic data regarding these patients were analysed in order to determine risk factors for postoperative aspiration. Post-discharge feeding routes and therapeutic interventions were extracted to examine the time spent using alternate feeding routes because of aspiration risk or poor caloric intake. Modified barium swallow study results were used to evaluate the effectiveness of the test as a diagnostic tool.
A retrospective study was undertaken of neonates who had undergone heart surgery from July, 2013 to January, 2014. Data describing patient demographics, feeding methods, and follow-up visits were recorded and compared using a χ2 test for goodness of fit and a Kaplan–Meier graph.
The patient population included 62 infants – 36 of whom were male, and 10 who were born with single-ventricle circulation. The median age at surgery was 6 days (interquartile range=4 to 10 days). Modified barium swallow study results showed that 46% of patients (n=29) aspirated or were at risk for aspiration, as indicated by laryngeal penetration. In addition, 48% (n=10) of subjects with a negative barium swallow or no swallow study demonstrated clinical aspiration events. Tube feedings were required by 66% (n=41) of the participants. The median time spent on tube feeds, whether in combination with oral feeds or exclusive use of a nasogastric or gastric tube, was 54 days; 44% (n=27) of patients received tube feedings for more than 120 days. Premature infants were significantly more likely to have aspiration events than infants delivered at full gestational age (OR p=0.002). Infants with single-ventricle circulation spent a longer time on tube feeds (median=95 days) than infants with two-ventricle defects (median=44 days); the type of cardiac defect was independent of prevalence of an aspiration event.
Aspiration is common following neonatal cardiac surgery. The modified barium swallow study is often used to identify aspiration events and to determine an infant’s risk for aspirating. This leads to a high proportion of infants who require tube feedings following neonatal cardiac surgery.
Karsch, E., Irving, S. Y., Aylward, B. S., & Mahle, W. T. (2017). The prevalence and effects of aspiration among neonates at the time of discharge. Cardiology in the Young, 1-7.
Read more….Cardiol Young 2017 (1-7)
Our hospital is working on creating a neurodevelopmental care team to implement in our CVICU. We are thankful to be involved and are working to gather research based evidence for what we do. We need research articles regarding the benefits of:
breastfeeding with cardiac dysfunction (any guidelines you are using?)
vocal cord dysfunction/aspiration following arch advancement/coarcs (any protocols you are using with ENT/VFSS/FEES?)
We have found some articles but would love to hear your thoughts/get additional research to support our cause 🙂
Thank you so much!
You mention many of the critical areas of consideration when working in the PCVICU (pediatric cardiovascular intensive care unit), as many infants and children with congenital heart disease have feeding/swallowing problems secondary to their cardio-respiratory co-morbidities as well as other associated co-morbidities. This population is at high risk for genetic syndromes, which opens an even wider potential for co-morbid conditions. Post-arch repair increases risk for left VCP and post-ECMO infants in PCVICU are also at risk for right VCP; early scoping by ENT and early ST involvement prior to resuming/initiating PO is essential.
Because many of the feeding/swallowing issues specific to prematurity involve respiratory co-morbidities, much of the literature on preterm infant feeding and NICU intervention will inform your practice in cardiac.
Search the ASHA list serve archive for past posts from many contributors regarding NICU feeding, pediatric cardiac feeding issues and feeding on high flow cannulae for some excellent considerations and references. You will also find applicable information on my website including my publications with extensive bibliographies of pertinent references that address co-regulated pacing, sidelying and other interventions. A literature search will also yield several recent helpful papers (on VCP associated with cardiac repair, benefits of breastfeeding, feeding challenges post cardiac repair etc.), and a search through ASHA will yield pertinent Division 13 CE articles as well as post-convention papers, for example from a presentation by SLPs from Boston Children’s regarding their work and my past NICU-related presentations as well as those of others pertinent to NICU and PCVICU practice.
Working in PCVICU provides an amazing environment for learning from both nurses cardiologists, intensivists and respiratory therapists. I absolutely love it there, although I think the well-intentioned goal of getting these infants/children discharged after surgery can lead to challenges such consistency of feeding approach, following a plan, not focusing on just intake but also positive learning and its impact on long-term feeding outcomes. I found that starting by learning from them, having collegial conversations that enlighten them about our perspectives, the research and our clinical problem-solving, all helped to open doors for professional respect, collaboration and partnership, and for engaging in the difficult conversations with nurses and physicians when a well-intentioned volume-driven approach becomes the problematic issue. Families are so grateful for the individualized infant-guided and child-guided approach we can share with them, as it allows them to build or rebuild a relationship with their sick child through positive feeding.
You will likely work with your own team to best create pathways and protocols that your team develops, once you have your feet on the ground and have a better understanding of your unique PCVICU population and your team’s preferences and past experiences utilizing therapy services in PCVICU. Once I had a sense of this and had built relationships, I provided an in-service to all PCVICU team members (and am set to repeat it d/t staff turnover) that allowed us to set the stage for their understanding of the unique considerations for return to feeding function, swallowing physiology, critical interventions, safe feeding, avoiding volume driven feeding, the high potential for feeding aversions, and the fragile nature of skills in this population.
Building relationships and bringing data seem to best go hand in hand when we start any new program. How wonderful they have asked you to be a part of their team. Know up front there will be daily struggles, just like in NICU, but they are all worth it at the end of the day. All the best to you in this endeavor!
Optimal growth and successful feeding in the neonatal intensive care unit (NICU) are difficult to achieve, and data indicate premature infants continue to struggle after discharge. The purpose of this systematic review was to identify growth and feeding outcomes in the NICU published within the last 10 years. Available evidence suggests weight-for-age decreases between birth and discharge from the NICU, and continues to lag behind expectations after discharge. Prevalence rates of breastfeeding differ across countries, with declining rates after discharge from the NICU. Interventions focused on increasing breastfeeding rates are effective. Most healthy preterm infants successfully nipple feed at a gestational age ≥ 36 weeks, but infants may be discharged prior to achieving full oral feeding, or eating with poor coordination. Earlier born preterm infants are later at achieving full oral feedings. After discharge, preterm infants are slower to develop eating skills, parental reports of feeding problems are prevalent, and parents introduce solids to their infants earlier than recommended. This review enhances professionals’ understanding of the difficulties of feeding and growth in preterm born infants that are faced by parents.
Ross, E. S., & Browne, J. V. (2013). Feeding outcomes in preterm infants after discharge from the neonatal intensive care unit (NICU): A systematic review. Newborn and Infant Nursing Reviews, 13(2), 87-93.
Read more…Ross Feeding Outcomes 2013 NAINR
For those of you who service school-aged children, Dysphagia Café has a thoughtful post by Emily Homer, a recognized leader in school-based services.
Click on the link below to inform your practice!
Question: Our department is rolling out a new oral care protocol. I am “on the fence” about this and I am worried that this practice may create more harm than good. However, we have lots of little ones on vents, HFNC and many “gut” babies that will be NPO long term. Many of these kiddos are at very high risk for infection and I think anything that can be done to prevent infection would be extremely beneficial. I have been asked to assist in developing the protocol and giving input as to how to go about delivering the colostrum w/o inflicting negative stimuli to oral cavity (this was my hesitation w/ the program). I am thinking perhaps the program should only include kiddos 30+ weeks as they may be more tolerant of oral stimuli. I thought maybe attempting to find a silicone swab of sorts to deliver colostrum via oral massage to gum ridge/buccal cavity may be appropriate. Any thoughts? Thank you!
The benefits of mother’s milk (MBM) 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 and to 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.
The key is that this 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 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. Practice of course, 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. So yes, there is potential for this initiative to do more harm than good.
I would avoid “oral-motor work” designed to focus on jaw work or 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 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). 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 and help caregivers embrace the critical impact this intervention can have if offered in a neuro-protective infant-guided way.
I hope this is helpful.
The Cue-Based Seminar planned for July 16-17 in Bronx, NY is cancelled.
The other New York Seminars will be held as planned in Valhalla NY on July 19-23, 2017:
Pediatric Swallowing and Feeding – July 19-20
Pediatric Videofluoroscopic Swallow Studies – July 21
NICU Swallowing and Feeding – July 22-23
See the Lodging/ Directions TAB for Valhalla details.
I look forward to seeing you in Valhalla!
I am proud to announce the publication of my two new manuscripts devoted to Infant-Guided Feeding in the NICU. I was invited to contribute regarding the NICU for the 25th anniversary edition of Seminars in Speech and Language, dedicated to Pediatric Feeding and Swallowing. I am humbled to be one author amongst colleagues well-respected in pediatric dysphagia. My goal was to share the science and art that underlies our role as skilled and thoughtful neonatal therapists. A sequel to my previous papers on using the infant’s communication as a guide during feeding and supporting parents in feeding their preterm infant, these contributions are designed to provide the theoretical underpinnings and interventions that are foundational in the Neonatal Intensive Care Unit. Support of an infant guided, co-regulated feeding approach is essential to both neuroprotection and safety for these infants who are entrusted to our care. I hope they inform your practice and extend your critical thinking with our tiniest and most fragile patients.
Below are the citations and abstracts, and the links to my articles follow, with permission from the publisher.
Shaker CS. Infant-Guided, Co-Regulated Feeding in the Neonatal Intensive Care Unit. Part I: Theoretical Underpinnings for Neuroprotection and Safety. Semin Speech Lang. 2017 Apr;38(2):96-105. doi: 10.1055/s-0037-1599107. Epub 2017 Mar 21.
Abstract: The rapid progress in medical and technical innovations in the neonatal intensive care unit (NICU) has been accompanied by concern for outcomes of NICU graduates. Although advances in neonatal care have led to significant changes in survival rates of very small and extremely preterm neonates, early feeding difficulties with the transition from tube feeding to oral feeding are prominent and often persist beyond discharge to home. Progress in learning to feed in the NICU and continued growth in feeding skills after the NICU may be closely tied to fostering neuroprotection and safety. The experience of learning to feed in the NICU may predispose preterm neonates to feeding problems that persist. Neonatal feeding as an area of specialized clinical practice has grown considerably in the last decade. This article is the first in a two-part series devoted to neonatal feeding. Part 1 explores factors in NICU feeding experiences that may serve to constrain or promote feeding skill development, not only in the NICU but long after discharge to home. Part II describes approaches to intervention that support neuroprotection and safety.
Shaker CS. Infant-Guided, Co-Regulated Feeding in the Neonatal Intensive Care Unit. Part II: Interventions to Promote Neuroprotection and Safety. Semin Speech Lang. 2017 Apr;38(2):106-115. Epub 2017 Mar 21.
Abstract: Feeding skills of preterm neonates in a neonatal intensive care unit are in an emergent phase of development and require careful support to minimize stress. The underpinnings that influence and enhance both neuroprotection and safety were discussed in Part I. An infant-guided, co-regulated approach to feeding can protect the vulnerable neonate’s neurologic development, support the parent-infant relationship, and prevent feeding problems that may endure. Contingent interventions are used to maintain subsystem stability and enhance self-regulation, development, and coping skills. This co-regulation between caregiver and neonate forms the foundation for a positive infant-guided feeding experience. Caregivers select evidence-based interventions contingent to the newborn’s communication. When these interventions are then titrated from moment to moment, neuroprotection and safety are fostered.
Question: Does anyone know of any research articles on the risk of feeding infants (term and/or preterm) who are on HFNC? Also I would love other people’s perspective of “turning down” an infant’s oxygen for the purpose of feeding. For example, a baby is on 4L due to acute illness but oxygen is decreased to 2.5L to feed.
Answer: There are a handful of pertinent articles which may be accessible via a search. The one I am attaching is the only study to look at the effect of NCPAP under videofluoroscopy, and it was done by Louisa Ferrara and her NICU colleagues in NY. Their preliminary results were so worrisome that the neonatologists stopped the study.
Unfortunately, often the conclusion regarding the “safety” and the “tolerance” of NICU infants feeding on NCPAP is determined by volume and perhaps lack of overt or symptomatic decompensation. This study will hopefully re-direct thinking about the impact of the need for this level of respiratory support on the ability to safely swallow under such conditions. As you will see, the study determined that “Oral feeding while on NCPAP signiﬁcantly increases the risk of laryngeal penetration and tracheal aspiration events,” and recommended caution when initiating oral feedings on NCPAP. The conclusions, unfortunately, did not focus on changes in swallowing physiology under NCPAP
My experience in the NICU suggests that, even for those infants who do not frankly penetrate or aspirate under NCPAP in the “moment” in radiology, we are likely to see adverse effects on swallowing physiology. That, for me, is the most compelling takeaway from this study. Bonnie Martin-Harris has taught us that neither aspiration nor penetration is sufficient or necessary for a swallowing impairment – meaning that our focus needs to be on physiology, because impaired physiology and its etiology(ies) create the conditions under which bolus mis-direction can or does occur.
It is not uncommon for neonates to evidence changes in swallowing physiology due to respiratory co-morbidities, even when stable on less support or indeed on unassisted room air. With infants requiring NCPAP or HHFNC, that is why our assessment of risk related to PO feeding or not PO feeding must consider many factors beyond level of respiratory support required.
Regarding your question about reducing respiratory support from baseline during PO attempt, this study gives us some information. However, the time on less support was brief, compared to the typical 25-30-minute PO feeding time. Because the aerobic demands of PO feeding typically exacerbate baseline WOB and RR in neonates, the full impact of such a change is unclear. If the infant is requiring a certain level of support, the reduction in respiratory support may – over the course of a true feeding – result in the need for urgent breaths, leading swallowing and breathing to uncouple. No one has studied this. What looks to some NICU caregivers to be a “solution” will have its own attendant sequelae, as do many things in the NICU, unfortunately.
And so, we remain in the “gray zone” as I like to call it, where there are more questions than answers, which is where most NICU therapists live. We must therefore consider theoretical constructs related to neonatal swallowing, continue to search for the evidence, use critical reflective thinking and dialogue with our neonatal colleagues. I hope this is helpful.
Just a few thoughts. Those developing the NICU competency will benefit from a period of reflective thinking to avoid the tendency to look for something already done or a cookbook, though guidelines can clearly guide and inform our own key learnings and formalized competencies. My dear friend and SLP colleague, Bob Beecher, from Children’s Hospital of Wisconsin used to say: “Cookbooks are made for cooking not for eating…use them wisely.”
SLPs mentoring new colleagues can develop very meaningful mentorship plans and identify objective SLP clinical skills for “check off” through careful reflection and application of current literature. This includes drawing from their own mentorship in the past (what worked, what was missing), or if you were not fortunate to have a mentor and came from the ground up alone, like I did in 1985 – what you now know is essential). Consider the current mentorship process in place (and feedback from recent staff mentored). Compile current literature that is essential as a foundation for NICU practice. Throughout the mentoring, it is critical to reflect that being part of an NICU is a journey, not a destination. Both the NICU’s evolution from a medical and technology perspective, as well as our own need to continue learning and growing in this rapidly changing clinical environment, are essential to an NICU practice that thrives and does so with respect and professional integrity.
Focus on providing the mentee with guided participation with and then assessing objectively (while supervised) their competency related to verbalizing and/or demonstrating the underpinnings of NICU practice during both evaluations and treatments. Even today these are rarely discussed in graduate school), and include: neuroprotection, medical co-morbdities and current technologies and their typical impact on feeding/swallowing, developmental progression of the dynamic systems (postural , state, oral-sensory-motor, respiratory, GI) that underlie feeding/swallowing for sick term infants versus preterm infants, guidelines for referral to ST (who, when, why, how to advocate), readiness factors for PO feeding and how SLP can support the progression to PO feeding (as co-morbidities permit), parameters for physiologic stability and indications of decompensation as well as how to avert and/or respond, the components of evaluation and completing a differential utilizing a wide range of data, explaining one’s differential to others (MD versus RN versus the family), instrumental assessment of swallowing physiology (why, when, how, potential intervention strategies and their benefits/risks), documenting to assist the team via your impression and plan versus only checking off boxes, strategies to support safety and their evidence-base (co-regulated pacing, resting, positioning, swaddling, state modulation, nipple selection), infant communication (signs of stress versus stability, signs of disengagement versus engagement), NICU equipment (what, why, application to SLP practice, progression of respiratory support, lines and their risks), team relationships (learning from other team members, bringing the evidence-base, difficult but respectful conversations, controversies due to the emerging evidence-base, supporting families), breastfeeding (physiology and relationship to bottle feeding, how to support as an SLP), common medications and potential impact of PO feeding. I am sure I am leaving something out but this is hopefully a start.
The depth and complexity of our work in the NICU, and the potential for these often fragile infants to decompensate, demand that both mentorship and competency assessment be carefully structured and supported. Our profession and our families deserve no less.
I hope this is helpful.