Problem-Solving : Infant with chromosomal abnormality and weak suck

Question:

I am seeing an infant born at  38 weeks now  day of life # 31 baby. Has weak suck. Is able to bring liquid into mouth but no coordination. to swallow. Most liquid pools in mouth and is spit out. Baby tires quickly. Baby has many other health issues including predominant extensor tone, cardiac, chromosomal abnormality-only 50 cases known  -life expectancy is very low). I would appreciate any suggestions re: stimulation of swallow, feeding intervention.

Answer:

This certainly appears to be a challenging newborn. From what you describe, there appear to be significant issues for swallowing safety and oral feeding may not be indicated right now.

Many sick infants with such a presentation actually have underlying low tone proximally. Thus the hypotonia that likely exists in the head/neck provides a poor base of support for the trachea and for the swallowing mechanism.  It is likely that both the intrinsic and extrinsic tongue muscles are hypotonic. As a result not only will the suck be weak, but the swallow will be affected (decreased BOT for posterior propulsion, decreased pharyngeal compression and motility related to reduced control of the constrictors, etc.). Due to underlying low tone throughout the upper body, it is likely that there are respiratory issues that may result in increased work of breathing, that might compromise timing of the swallow-breathe sequence.

What is his actual diagnosis? What are his pharyngeal reflexes like? Often in such babies those reflexes are unreliable. Does he swallow his saliva? Sounds like it may also pool as does fluid offered. What is his state regulation like? What about work of breathing? What is the status of his airway —is there any auditory suggestion that he is not maintaining it? Not uncommon with such a postural presentation.

Given what we know, I’d suggest a swallow study. It is likely there is a delay in the initiation of the swallow, along with reduced pharyngeal motility and clearing, and the risk for silent aspiration, given what you describe, is high. This information about his swallow will be important to your intervention plan and for the discharge plan,especially since he has already been hospitalized a month.

I’d also recommend to the neo that we limit to gavage feedings only, with swallowing trials (as safety permits) by the SLP. Intervention would include a good postural base (via swaddling and positioning–well-supported sidelying may help tremendously; check with OT/PT as needed), work on the intrinsic and extrinsic tongue muscles (via deep pressure input, direct and indirect tapping, direct NDT techniques to the muscle groups of the tongue to improve stability and control); the cheek/lip muscles may benefit from direct input as well, as they are likely also to be hypotonic given what we know. This is not to say that the cheeks/lips need to be active (they are not active in normal infants  until 3-4 months of age) but they do provide postural stability for the tongue during young infant feeding. If the pharyngeal responses are diminished, again likely with this presentation, I have found some direct sensory-motor input can be helpful. Depending upon results/impressions from the swallow study, one might consider, after providing the sensory-motor preparation just described, offering  trace amounts (single sucks at best) of fluid via a slow flow nipple, which would have been trialed in Radiology (Dr. Brown’s Premie Flow level P or Enfamil slow flow) and observe.

The other issues are of course ethical and quality of life if indeed life expectancy is limited with his diagnosis. So close collaboration with the neos and nurses, and family, regarding safety issues and impact is essential. Volume won’t be the goal if swallowing trials are initiated. He will need some form of tube feeding for his nutrition.

Likely this would be an NG if life expectancy is short and prognosis overall is poor, but in some cases a PEG is placed. On-going therapy that may eventually be more monitoring or episodic, is typically provided after discharge.

Catherine

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