Question

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:

pacing
side-lying
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!

Answer

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!

Catherine