Question:

I have a baby who was born around 38 weeks GA, now about 3 weeks old (I can confirm when I’m at work tomorrow if needed). Attempted vaginal delivery, but baby began having HR decels. Emergent C-section, mother’s uterus ruptured, and infant was free floating in the abdominal cavity. Coded at 10 min life, resuscitated. Whole body hypothermia protocol for 3 days, then re-warmed. Inconsistent gag reflex, poor secretion management (although improved significantly), no rooting reflex, no sucking reflex. Now on RA. With the exception of improved secretion management and stability on RA, there has been no improvement. Received G-tube yesterday. Likely will go home later this week.

Parents are amazing and I’m wanting to give them everything I can. I’m putting together a packet of information on including tube fed children in family meals and preventing oral aversion, things like that.

I’m just looking for any good handouts or information anyone may have that I can use. He’ll be set up with outpatient, but the family will do anything that may help at all.

This is the first baby I’ve worked with that has had absent rooting and sucking, so I feel stuck on how to treat.

Catherine’s Answer: 

In my experience, sounds like moderate-severe HIE given the impact on oral-pharyngeal reflexes. What did MRI Brain show? That is essential to our differential. What does OT say about postural tone and movement since it is a base for oral-motor control? Likely diffuse postural hypotonia but may be starting to show some atypical movement patterns and an abnormal increase in tone, depending on MRI. In the setting of neurologic co-morbidities as devastating as this appears to be, the diminished pharyngeal responses (i.e., inconsistent gag response) reflects pathology. Would suspect that if pharyngeal responses are inconsistent, there is a co-occurring impact on pharyngeal constriction, and saliva swallows are impaired to some extent. Remember that the suck, swallow, and pharyngeal responses are underpinned by cranial nerves with overlapping function —so most often, the suck, swallow and pharyngeal are impacted to a similar extent. There is a good chance he is aspirating his saliva silently, as he may lack the sensory registration and motor responses to elicit a timely and effective cough. Sounds like you been seeing the infant in the NICU, and he is being discharged to EI/home? These infants with this level of neurologic insult are so sad and are so complex. I remember the first one I was consulted on way back in the early 90s – we did not call it HIE back then but that is what it was. Despite 10 years in EI at that time with complex infants, no one knew how to help these infants that started to survive a difficult perinatal course. That is one of the reasons that I later developed my NICU Swallowing and Feeding and After Discharge seminar, and my Advanced Infant/Pediatric Dysphagia seminar —-to share my discoveries and support clinical problem-solving of our complex patients, across the age span. The aberrant oral-pharyngeal reflexes and facilitating the sensory-motor components that will support eventual function become the focus both in NICU and EI. For parents right now, it’s all about providing motor learning during their interactions —provide infant with good postural support and midline stability with UE/hip/knee flexion, chin tilting down, via very very secure swaddle; elevated sidelying cradle turned toward caregiver with hands supported near face; facilitate rooting response on own hands and via mother’s finger using deep pressure (not expecting him to respond but focusing on providing input for the brain); firm deep pressure to blade of tongue in rhythmical one per second pattern to provide motor learning for future sucking (using his own fist, mother’s finger, firm pacifier). Lots that we can then offer as therapists via NDT, sensory-motor learning, oral-sensory interventions for developing underpinnings for rooting, non-nutritive sucking, effective saliva swallows and state regulation. These babies are complex and teach us so much! Hope this gives you a place to start. I look forward to seeing you at one of my seminars, where I can expand on these interventions.

Question:

I have a 2.5-year-old preschooler with DiGeorge syndrome. He spent the first few days of his life on a respirator and when he was able to come off of the respirator and drink from a bottle, he would throw everything up. They put in a PEG due to aspirations and he was put on steroids to help with vomiting. Now, he is able to eat all textures of liquids and solids without aspirating but he refuses to put anything in his mouth (he is probably traumatized from his eating difficulties). I have been working with him for a year on having positive experiences with food and educating the parents about reducing the pressure for him to eat while still showing him positive experiences with food. He has made very little progress and recently started putting his fingers in his mouth to make himself vomit after every meal. Does anyone have any recommendations of what I can do to help this little guy?

Catherine’s Answer:

I am assuming the data about “able to eat all textures without aspirating” is from a recent swallow study? Was there any information about what they saw regarding his swallowing physiology to “round out” the impression from the VFSS? While they may not have witnessed aspiration during the study, his swallowing physiology may indeed predispose him to airway invasion. I ask because it is unlikely that the typical sequelae from a DiGeorge diagnosis have all resolved (e.g., oral-motor, craniofacial, cognitive, sensory, sensory-motor, respiratory for example). The data that they did not witness aspiration during the swallow study is likely just one piece of the puzzle. Is he followed by OT and PT? Is GI following? Go back to the drawing board and take a second look at him –his clinical presentation — separate from what you know about his “not aspirating” from the swallow study, and see what pieces stand out as problematic for GI comfort, prerequisites for PO, possibly learned behavior, and what questions you want to ponder as you consider next steps. These little people with DiGeorge are so complex, and changes will be slow, challenges with feeding are often enduring. Even with being off the vent and on RA now, he may still have some breathing/airway/coordination issues with solids and liquids that continue and are roadblocks, both related to co-morbidities and also related to learned behavior. Good that you are helping the parents pump the breaks on PO. They may view him as ready to eat and they likely don’t realize there is so much more required than just “not aspirating” during the VFSS to allow safe and successful PO, given his bigger picture.

Question:

I have a question/need help please! A patient recently was added to my caseload. Another SLP at a different facility completed his MBSS and notes no aspiration but flash penetration with all liquid consistencies.  The family was recommended to thicken liquids to nectar thick with oatmeal, and for us to trial weaning from NTL. My facility is not familiar with IDDSI recommendations or thickening with oatmeal.

Is anyone familiar with thickening with oatmeal, and if so, what guidelines do you use for measurement? (What’s the ratio for thickening with oatmeal?)

Also, the patient just turned one year old. He presents with lingual and labial restrictions and consistent open mouth posture. Parents were told by an ENT his mouth is “perfect” so despite my recommendations for a second opinion, they refuse to. They also refuse e-stim therapy to help target pharyngeal phase deficits.

The SLP who completed his MBSS also recommended they go down to a Dr. Browns Level 1 nipple for thin liquids. We have been working on oral phase deficits; however, I feel we are at a plateau due to things behind my control (anatomy). Any recommendations on how to proceed?

Catherine’s Answer:

Missing info both about history, co-morbidities, and specifics from VFSS which makes it hard to problem solve. Without that data we might just be guessing and selecting interventions that don’t align, might be unsafe or contraindicated. You might not have been given that info but it is key to problem solving—- All we know is there was flash penetration and no aspiration —that doesn’t help much because we are missing information about physiology/pathophysiology —but you mentioned “oral and pharyngeal phase deficits “ in passing — the open mouth posture and other issues may be related to nasal airway patency, hypotonia, poor postural control, global impacts of TOTs, and multiple other factors that may be identified through his history and clinical presentation. That he did not aspirate doesn’t mean his swallowing physiology isn’t precarious —in the setting of his co morbidities (which we don’t fully understand). Recent research at Boston Childrens suggests laryngeal penetrations in the setting of co-morbidities are not necessarily benign — meaning they may benefit from interventions. Not necessarily thickening but even change in utensil or rate of drinking to avert the penetrations. All that should be problem solved during the VFSS including best way to avert penetrations and improve the dynamic swallow. And thickening is a last resort, so we hope other interventions were trialed and objectified. If thickening was the only option left, objectifying the best way to do that while under fluoroscopy is essential. Because clinically we would be guessing at what “works” since we can’t objectify impact of the possible interventions. And that is why starting a weaning of the thickened liquids isn’t the first or next consideration in managing this patient. Too many missing and moving parts. Sorry I don’t have suggestions yet —my mind is moving out of necessity to lots of questions to help me then consider potential solutions. Pause and look again at what pieces are missing, gather that data, consider that based on history and comorbidities, and clinical behaviors.

Question:

How often are swallow studies typically repeated? Yearly or just when there is a status change until not needed?

Catherine’s Answer:

Since our goal is to minimize radiation, especially with infants, it’s key to look closely at the risk-benefit ratio of a repeat study. Most often that means: if there is decline in swallow function despite following recommendations from most recent study; if there is a change in patient status (illness, new co morbidity, regression in overall skills, consideration of G-Tube removal or decannulation for example); if the results from the most recent study were tenuous or based on limited or inconsistent data, or the SLP lacked confidence in the results; if there were technical problems ( unable to record so review of physiology not possible leaving results less assuring) for example. When we lock ourselves into an arbitrary number of weeks or months for a repeat study, then our clinical thinking can become arbitrary and generic instead of based on that patient’s unique history, co morbidities and clinical impression as to how fragile swallowing physiology is — even with interventions. Especially when we consider that child’s feeding environment (need for modifications, parent follow through and fragility of medical status, for example). The decision about timing for each child will be unique. It’s a good reminder about avoiding arbitrary points in time for anything in our clinical planning/practice. Your unique patient is always the guide.

Question:

Looking for suggestions. What (if anything) would be safest to offer a Kindergarten student with Muscular Dystrophy that has ongoing respiratory concerns (and is frequently absent as a result), currently maintains all nutrition via G-tube due to some choking episodes when fed at home and is seated behind a shield with his nurse and instructional assistant on either side. Family is insistent on having him engage in an oral experience during lunch with his peers and is suggesting a Tootsie pop which should be taken away before he gets to the candy which I am not comfortable with at all. There are no doctor’s orders on file, and we cannot demand them. Any ideas or discussion would be greatly appreciated.

Catherine’s Answer:

I would not offer anything PO, based on both child’s diagnosis and the history we know of, without an instrumental assessment of swallowing physiology and subsequent physician orders. I would be documenting that in the child’s record as my current recommendation based on information currently available, with a documented phone call to the MD, and the MD’s direction. And I’d pull in administration/my leader from the start. The risk appears quite high for airway invasion from what we know, which is limited but well presented. Although the parents want the child fed, I would not proceed. The risk for you is worrisome. As an expert witness in previous similar cases where there was an unintended adverse event, I would otherwise be concerned about potential liability for you. It can happen, unfortunately.

Question: I have a patient in our NICU with a left sided cleft palate and lip. The patient developed ulcers on the exposed palatal shelf, which are suspected to be due to “mechanical trauma” from feeding. We we’re initially using Dr. Browns specialty valve bottle. We switched to the Haberman bottle to see if this improved the situation, but they did not heal and seem to become more irritated as he feeds more.  We have now stopped feeding and plan to re-assess once the sores have healed. The patient has shown ability to safely feed with both the bottle systems we’ve used thus far and loves to eat!

I am being asked if there is a different bottle system that may prevent “friction” against the palate. I’m not sure a different bottle system would make a difference but have never come across this situation before. I’m having trouble finding any research regarding feeding-related ulcers in cleft palate cases. Dermatology has been consulted and agrees it is likely feeding related. Have you come across this before or have any suggestions that may prevent further irritation of these areas??

Catherine’s Answer: I too have seen this unfortunately, though it is not a common co-existing issue for most infants I have followed with a cleft palate (both in the newborn Nursery and in the NICU). My initial thought is that it is uncommon for an isolated cleft in an infant admitted to NICU to delay discharge by a month; if there is an isolated cleft, most infants with proper support become full PO feeders within about 48 hours, in my experience.  It makes sense as I then read your follow-up info, that the co-occurring co-morbidity of what sounds like NAS/NOW may be further complicating the provocation and persistence of the ulcers. Is the infant preterm as well?

Things I am thinking about. Both prematurity and h/o NAS/NOW with sequelae, potential other co-morbidities, and how the infant is being fed could all be factors.

Optimal motor learning in utero is adversely affected by preterm birth, regardless of the cleft. That makes the infant’s adaptability to the nuances of sucking and feeding more precarious. If there is any increased WOB relating to prematurity, that may interfere with a functional sucking pattern (adaptive behavior to stop flow to allow for a breath). State dysregulation, if present, may predispose a well-intentioned caregiver to “passively assist” or prod the infant with could create further friction.

Also, the infant’s oral-motor integrity that underpins sucking may be altered due to a tongue which lacks good midline stability for stripping; this is not uncommon in the setting of cleft palate. It may be due to lack of motor learning in utero. In utero, there is the likelihood that the tongue “stabilized in the clefted space” instead of the typical intrauterine tongue-palate contact that builds midline stability during sucking and swallowing of amniotic fluid. Does that make sense? For the typical fetus, that motor learning is why feeding emerges apparently effortlessly in the typical newborn. The presence of the cleft in utero creates an altered sensory-motor plan that then impacts function.

This would then potentially lead to a loose and disorganized latch and seal of the tongue on the nipple. If the caregiver doesn’t actively stabilize the nipple in midline (which best supports effective compression for fluid transfer), there can be friction created by repeated attempts of the tongue to latch. As Lauren suggested, stabilizing the nipple in midline can help the infant organize and achieve a stable latch that recues friction. I have heard some bedside caregivers suggest putting the nipple in the clefted area during sucking; assuring this isn’t happening will avoid some undue friction, as well promote more normal oral-motor patterns.

I would also suspect that a co-morbidity of NAS/NOW could further predispose the infant to disorganized sucking pattern that creates more friction due to less stable lingual contact with nipple. State neuro-dysregulation common in infants with NAS/NOW may provoke disorganization that further complicates potential for friction.

If there are co-occurring co-morbidities structures (mandibular hypoplasia, tethered oral tissues) that can also affect lingual patterns at rest and with function. Unclear if this is a concern with this infant.

Multiple potential factors to consider. Depending on the “why” that you determine applies to this unique infant, possible interventions might include: introduce post-feeding oral cares that maintain mucosa for future repairs and minimize dryness (our maxillofacial surgeon asks caregivers to sweep the intraoral structures with EBM or sterile water to clean off any formula and optimize tissue hydration for ease of future suturing). Stay with one feeding system for motor learning (Dr Brown’s best allows infant-guided feeding as it cannot be squeezed by well-intentioned caregivers). Continue to work closely with nursing and family via guided participation (during some PO feedings for one-to-one learning) re: stabilizing nipple in midline and why, avoiding prodding, using infant guide rooting response to help infant optimize tongue placement at the start, provide required swaddling and stability and vestibular/tactile input that promotes state regulation, discuss benefits of lanolin-based cream with pediatric dermatologist who is following and neonatologist, honor infant’s disengagement.

This can be challenging, as many caregivers have their own approaches that may not be optimal for this unique infant. Maybe a neo or APRN can work with you, and you can be present at rounds for a few consecutive days, and have a few key nurses on each shift that “get it” and perhaps become the infant’s primary nursing team to support continuity of care and partnering with ST.

I hope this is helpful. Good he has you in his corner.