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.
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.