Question:

I am feeding a bit frustrated and just curious what others are thinking. I recently worked with twins in the NICU:  born at 24 + 6, BPD, one with history of bowel perforation and IVH grade II and the other with PVL. Both had G tubes placed while in NICU.  I did VFSS on both while in NICU. One did well with small volumes; she was able to DC home with small amounts of thin liquids via preemie nipple and small amounts of breast feeding. She was making slow but steady gains and showed good comfort.   The other one had some difficulty with swallow safety with abnormal VFSS.  He DC to home on small volumes thickened liquids via bottle and mom was also working on small trials of breast feeding with him as well.  Wonderful parents.  The babies had fantastic and very consistent RNs during their NICU stay; it was one of those times where you felt like everything was working well for these babies with histories of extremely preterm births and multiple co-morbidities.  The parents set up OP therapy services right away; they were told fairly quickly that both babies had tongue / lip / cheek ties and would benefit from a consult with a dentist to do the releases. The RN and neonatology staff came to me immediately and questioned this as the parents had reached out to them with concern.  I advised then to suggest the parents get a second opinion from one our ENTs who routinely work with our NICU babies during their stays and on follow up.  Thoughts?

Answer:

We do see preterm infants with lip and tongue ties that can adversely affect lingual thinning and cupping and effectiveness of tongue-palate seal. This in turn can lead to diminished volume transfer and lead to early fatigue, as the ineffective effort yields less than ideal intake and tires the infant. The infants you describe however also clearly have additional/other potential etiologies for their limited PO intake (24 weeks, CLD, GI and neuro co-morbidities).

The possible restrictions as identified by the OP SLP, if they are indeed present, could further contribute to their feeding challenges. However, the ties in and of themselves, if they are present, are likely not the reason these infants required G-Tubes, rather, their co-morbidities were. The ties would create further struggle.

Unfortunately, depending on how the OP SLP explained her concerns to the parents and how much she considered the co-morbidities these twins present (which are known to highly influence feeding success), there may have been the impression created that the G-Tubes were “not necessary”. The OP SLP may have been clear that the ties would create further challenges and weren’t the primary problem, yet the family, wanting to hear the G-Tubes were “never necessary”, took away a much different message. The NICU team (who hopefully recognizes the co-morbidities these twins presented are associated with increased G-Tube requirements), had an obligation to explain (or re-explain) the bigger picture to the family –i.e., co-morbidities matter when it comes to feeding (research shows that), and,  if there are indeed ties, which can unfortunately be missed at times, then correcting the ties, if ENT chooses to do so, would not change the need for the G-Tubes.

It is all too easy to instead assume that missing the ties, if they indeed exist, is why the infants received G-Tubes. Well-intentioned NICU staff may have reacted without understanding that “co-morbidities matter” (this is my most-used mantra during my NICU work and teaching) — but they do! Too often it seems co-morbidities don’t matter, as decisions/prognoses/plans about feeding are made by the medical team without regard to the infant’s co-morbidities. I find if we follow the co-morbidities, then our differential, prognosis and plans for these infants are likely to be appropriate.

I would reach out to the OP SLP, find out what she noted as indications of ties exist that might have been missed, share insights regarding the stamina and co-morbidities that created the need for GTube while you followed them in the NICU, and build a relationship through which there can be sharing and learning.  

I would also follow-up with my NICU colleagues to continue the conversation and reinforce the bigger picture that I referenced above. Too often SLPs can become the “reason” a preemie gets a GTube, or so it seems. This notion, which can discredit us as a profession or as individuals unfortunately in the eyes (and voices!) of some team members, and then by connection, some families, will change only with continued conversations. This is one of those times, Linda. Your likely recommendation for a GTube during their NICU stay wasn’t made lightly and I am confident was appropriate. The dialogue you have now is important for you, your team and for families fortunate to have your care in the future.

I hope this is helpful.

Catherine