Question: I have been treating a 24-month-old little girl that has had a complicated medical past including prematurity (27 weeks gestation with a birth weight of 2.2 lbs. oz..), Down syndrome, AV canal defect, ventricular septal defect, duodenal atresia s/p repair, and respiratory distress in newborn requiring intubation at birth. Additional diagnoses included: bilateral sensorineural hearing loss, GERD, VUR/urinary reflux, anemia, and hypothyroidism.  I started seeing her nearly a year ago and referred her for an OPMS due to frequent upper respiratory illness although she had no outward signs/symptoms of aspiration.  She was found to be aspirating thin liquids and the recommendation was for honey thick liquids and fast flow nipple.  She has done well in therapy and has transitioned to a variety of table with liquids by cup and bottle.  She is returning to pulmonology soon and the doctor wanted to know how she is doing with thin liquids.  I’ve been hesitant to recommend going back to thin liquid without a follow up due to the history of silent aspiration.  Do I try distilled water with nursing to check of O2 saturations to give the doctor feedback? I think I would still want a repeat instrumental since the history of silent aspiration and respiratory illness. Any other thoughts or possible suggestions?  Parents are very nervous with feeding although she has done very well in treatment and the overall frequency of respiratory illness has decreased.

Catherine’s Answer: Sounds like a child with multiple complex co-morbidities that are likely combining to create the etiology for her feeding challenges. From what we understand about her, we don’t know what the etiology of the silent aspiration events was. Without the etiology(ies) and understanding her swallowing pathophysiology, it must be hard to fully understand what to work on to improve her swallow function. That also would inform our problem-solving as to the contributing factors, the nature of the swallowing impairment and potential for improvement, in the context of her medical co-morbidities and multi-system differences. Contributing factors seem to be cardio-respiratory and GI, as well as postural tone, oral-motor and sensory. These likely combine to create risk for uncoupling of swallowing and breathing. The lack of clinical suspicion prior to the original instrumental assessment followed by silent aspiration creates increase risk for her, given her pulmonary status. So, your concerns are appreciated. I think it is uncommon to have infant on honey thick liquids because the risk to aspirate, given such impaired physiology, remains, despite the thickening to honey. And if she does aspirate honey thick liquids, that may create significant challenges for her lungs, given the history we know. That said, she has been on thickened liquids of a year. We typically reassess physiology much sooner in the developing infant with multiple co-morbidities.

Depending on the original data gleaned in radiology, at that time pacifier dips of thin liquid would have been an avenue to allow for purposeful swallows that activate the fast twitch fibers and promote interval sensory-motor learning with tiny amounts of thin liquids. That way when she returned to radiology to relook at physiology, we would be less likely to have an artifact -i.e., lack of careful recent sensory-motor experience with thin liquids that can create a predisposition perhaps to mis-direct the thin liquid. So, dipping the spoon in thin liquids for some tiny tastes may help at this point to safely prepare her while minimizing risk. Of course, there is risk to aspirate the trace tastes used for purposeful swallows, but one must weigh the need to set her up for success with recent sensory-motor experience for a brief period and then take her very soon for a repeat instrumental assessment. With a focus on physiology during the swallow study, and not just whether she aspirates, current data can be provided to guide her treatment. Hopefully interval improvements in the underlying co-morbidities and your good intervention may allow for safe advancement of her liquid diet, even if only in a therapeutic situation, A year is a long time to be on honey thick liquids., and that is not without its own attendant sequelae. You are asking good questions. Keep us posted.

I hope this is helpful.