QUESTION:

I work with a child who is  two years old, and was diagnosed in October 2020 with neuroblastoma. She is fed through both a g-tube and by mouth minimally. Generally healthy. She completed chemotherapy at in April 2021. She began immunotherapy and will receive treatments one week per month (M,W,F).

Mom reports there was a never a concern for a true “swallow disorder” in regard to risk for pneumonia or ever a need for an instrumental swallow study. Mom reports that after her child was diagnosed with Neuroblastoma, the medical team considered an SLP to evaluate her swallowing due to an oral pocketing, lack of appetite and coughing concern; however, she was seen 1-2x by the inpatient SLP who deemed her “OK” and “fine” to eat, and “no need for instrumental”.

Per mom report, she was told that the feeding issue was behavioral/sensory, and that for nutritional / hydrational reasons, she received an NG tube, then a G-Tube was placed (end of November). Mom reports that she was told that her child can technically come off the G-Tube but since she wasn’t eating enough eating enough, it will remain placed.

Mom reports that now her child is being fed mostly through GTube and “not much” orally; reports approximately  2 spoons yogurt, OR 10 cheerios, OR dry cereal, nibble 1 bite of noodle, 1 bite of a freeze pop; mom reports that when she sees her siblings eat, she desires it, yet once given, she will throw it away.

I saw the child today; she ate 3 spoons of chocolate yogurt with no problem, 1/2 chip with functional oral skills and no overt issues. Mom then brought her favorite food: chickpeas (spicy flavor), the child ate about 10 pieces, then picked the last piece out of her mouth, gagged, burped, and proceeded to vomit a large amount of orange secretions. Given a sip of water, she began coughing.

When questioned, mom reports that this happens often with certain foods (“even the non-spicy chickpeas“), however they don’t always see it because she “hardly eats”. I recommended perhaps a GI consult and/or follow up with hospital SLP to consider instrumental exam.

ANSWER:

It is challenging when the infant’s/child’s history is provided solely by the parents. They may recall information incorrectly, forget critical details that would assist you, misinterpret what was said or what transpired, or perhaps have focused only on part of what they heard that might have been more readily understood or accepted at that time. On the inpatient side, especially after a critical diagnosis of neuroblastoma, the aftershock and the stages of grief set in for parents. They have told me it is like a fog sets in, it’s hard to remember what you heard, and it’s scary. During that time, information processing is very much affected by the stage of grieving they are in, the acuity of infant’s child’s medical situation, the early progress during inpatient stay and the multitude of consultants that come in and out of their daily lives, as they stay at the hospital, who touch them and their child each day. I see it first had as I am in the room with a family and an infant/child, a physician comes in to examine and update their differential and the talks with the family. Or the team does morning Rounds. It can be overwhelming for parents but intended to be so helpful. Everyone is typically thoughtful, and share a lot of crucial information, answer questions, listen. One parent might not be there due to being at work for example and gets the information second hand from a family member. After the physician leaves, the reprocessing often begins as the parent wonders aloud and then “digests” what actually transpired or what they heard through weary ears. Add this to the critical decisions made by the team and asked of the families when they are under emotional stress. I wonder sometimes how the families get up each day and come back so kind, so thoughtful, and so caring, yet completely drained so much of the time.  It is within this context that they then store and late recall for you on the community/OP side, the important information.

It is possible that the SLP did have concerns about swallowing safety, which would be likely given the diagnosis. The SLP may indeed have expressed this concern, and the team decided otherwise, which can happen.  The parent may have found the SLP’s concern about swallowing surprising and kindly with respect disregarded it. It is hard for parents with a sick child to think now even eating and drinking m might also be a problem and the child might “lose” that as well. Sounds like interim pleasure feeding trials might have been recommended or perhaps there was a plan to complete an instrumental assessment, and, for multiple reasons, it was cancelled and there was a plan to follow-up with OP study. Possibly mucositis r/t chemo was apart of the decision. So many possibilities. This is not to say that as inpatient SLPs we don’t look back and say “hmm, I wish I would have…”  or “I wonder if I had…”  That is a part of doing your best to minimize risk and improving one’s practice, thoughtfully reflecting on how we can do better. Without that SLPs input, we just don’t know what unfolded.

Perhaps ask Mother for a release of records for SLP services during IP stay and get her authorization to contact the SLP staff directly and speak with the SLP who cared for this child, to get that SLPs perspective and objective data. That will hopefully bridge the gap for Mother and for the child and for your planning your next steps.

Thanks for reaching out. We are all part of a big team that continues beyond the walls of the hospital, to support each other.