Question:

Do you have any suggestions for working with a NICU baby with Moons Rasopathies and food aversion?

Answer:

Do you mean Noonan’s Rasopathies? You don’t mention much about the infant so lots of pieces that are unclearing terms of problem-solving. Not sure if he is in the NICU currently or was in the NICU in the past. But here are some thoughts.

I always look at the system problems that are contributing, i.e. motor, oral-motor, sensory, oral-sensory then focus on those systems and their breakdown. What are the implications of that diagnosis for the underpinnings for feeding safely and well enough to grow. Aversions in an NICU infant and even in an older child are likely a byproduct of the systems that are altered or impaired.

Typically, with Noonan’s, it is hypotonia and altered craniofacial integrity (structural and muscular), plus the adverse effects of the need for NICU care (? Prematurity? Sick newborn? Need for intubation? Respiratory history? Current need for respiratory support? State regulation? Other complex co-existing co-morbidities – such as cardiac, neuro, GI, airway etc.? )

Be sure reflexes are consistent enough to even try pacifier dips. May look aversive due to infant is trying to protect himself (due to respiratory or swallowing safety issues). Lack of engagement maybe an adaptive behavior, a purposeful attempt to avoid feeding. or it may be lack of skill combined with disengagement. Take time to reflect and sort out “why” infant appears  “averse”. Patience and caution will be critical. Normalizing the oral-sensory system, in the context of the reasons for the apparent  “aversions” (or lack of engagement with feeding) will be a needed part of your problem-solving intervention.   If infant has the prequisites and is engaging, and you decide it appears safe to assess small PO trial, I suggest offering slow flow nipple , sidelying, resting , strict co-regulated pacing and use watchful vigilance. An instrumental assessment early on will be most important to objectify physiology due to high risk for airway invasion related to co-morbidities. Part of your role will likely be to protect the infant from being pushed to PO feed by well-intentioned caregivers.

Hope this helps.