My IBCLC colleagues and I need help with an unusual case. What may we be missing?!? Mother gave permission to post. Dyad was seen outpatient. One IBCLC colleague did most of the consult but 2 of us who were working on the inpatient mother-baby unit “dropped” in for input.
Assessment data (hope the bullets, etc. work so not too hard to read):
5 month old girl who won’t feed – has naso-gastric (N-G) tube in place for feeding
· Occasionally breastfeeds (BF) for a few minutes at a time; test weighs have usually shown transfer of 2oz (60ml) in 40 min; generally “refuses” the breast after brief period
· BF better earlier in baby’s post-birth 5 months
· Was given a bottle at couple of weeks when not gaining – will not take bottle now
· Was taking 3-5 oz per bottle – now vomits if gets more than 1.5 oz; does not matter if EBM only or EBM+alimentum to increase calories
· Has gotten worse in last few days and lost a few ounces
· Pushes out at spoon but has allowed some small tastes of baby cereal
· Hypersensitive gag reflex (based on IBCLC objective data)
· Aversive behaviors with introduction of oral object beyond lips (includes IBCLC objective data), sometimes pushes away at breast; aversive re: banana medication taste
· Baby places own fingers in mouth but did not put them past lower gum line when I was observing
· Per IBCLC doing consult assessment – baby has “bubble palate”
1. Baby born at about 38 weeks and was 5lb-8oz (2500g)
· I wasn’t available during weight check (and tracking down colleague who did it will take a lot of time), but baby looks appropriate for 5 months re: length, weight, – not fat/not thin
2. During time I was in consult, baby made good eye contact, smiled often, vocalized appropriately for age; mothers says beginning to roll over
3. Told by pedi that baby’s head (circumference) is “slightly small” but now on
· Overlapping (still) of suture re: frontal bones/sagittal suture per IBCLC objective data; anterior fontanel palpable but overlapping makes smaller than seems usual/typical for age
· Mother thinks baby’s head looks “funny” but it looks round/balanced on both sides – perhaps less disproportionately large than expected for an infant
4. Seeing feeding team at local children’s hospital and has been to Cleveland Clinic; in addition to own pedi, has seen:
· Pedi gastroenterologist (here & Cleveland Clinic)
o Endoscopy showed nothing
o GI biopsies – negative
o GERD – ruled out
· Pediatric neurologist – ruled out neuro problem
· Neonatologist in area who is now focusing on BF consults
· Occupational Therapy – who thinks issue is medical vs. developmental
· Speech-Language Pathologist (probably – had swallowing study at some point and only SLP do those at the facility where done)
5. Has not seen:
o Cranio-sacral therapist (CST)
o Sensory integration specialist
6. When I asked about Kangaroo Mother Care (KMC – described for mother), she described a very limited, modified KMC, e.g. few minutes or baby without shirt but against mother’s shirt.
Mother had that “if I don’t smile, I’ll start crying” look when I was in the consult. Says her, her mother-in-law’s and husband’s lives revolve around getting food into this baby; baby is given food in tube on a 1-2 hour basis around-the-clock to get enough calories into her. Does not “protest” if not fed; will go many hours without cueing to feed.
Mother also says she is frantic because a “feeding team” conference is planned for this week. She believes the recommendation will be to “pull the N-G tube” for 2 weeks and “force” the baby to BF, because the pediatrician and related specialists do not believe there is a physical problem. The mother does not believe this will work. She is concerned about the baby’s response and her ability to manage. (I don’t blame her. I’d feel the same.)
We suggested a CST consult (and provided referral name) and sensory integration consult. The 3rd IBCLC who came in had an interesting observation; she said the data made her think of what one hears re: teen girls with anorexia nervosa. I’m having a hard time believing this is an infant psych issue; there just seems more too it. (Munchausen [sp.?] by proxy was a thought I have, but is that more of a “zebra”?) I’m wondering where the “bubble palate” and overlapping sutures “fit.”
Obviously, this appears to be an overall “infant feeding difficulty” of which the BF seems to have been the first “messenger” vs. the actual “problem.” However, this mother says she’d be grateful for any outside thoughts and there is such collective “infant feeding issue” experience on this list.
Thanks in advance. Don’t know if it’s more appropriate to respond via the list or via personal email. I’m open to either format.
Karen Gromada (MSN, RN, IBCLC)
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