I have permission to share this case and looking for some worldly  wisdom.
 
My notes are at work so will try to recall all the stats.
Baby was born in March, 35 weeks gestation.  Mother is from  Central America, 
only speaks Spanish and is illiterate.  Her husband also  only speaks Spanish 
but can read.  This is their first child.
The baby had to stay 12 days in the hospital after birth due to hyperbili  
and vomiting.  Mother had been breastfeeding and then allowing  supplements.  
Whenever the baby had supplements she vomited.  Nothing  in her records 
indicated a problem at birth or through the mother's  pregnancy.  Birth weight was 5-1.
Baby was discharged home with the mother breastfeeding and giving some  
occasional bottles.  Two weeks later baby is readmitted with  vomiting.  Tests were 
done on the baby and the only diagnosis made at that  time was intolerance to 
the formula and reflux.  A small murmur was  detected but the follow up on 
that has been insignificant.  The baby  was discharged only breastfeeding and 
follow up with GI.  The baby tends to  have short nursings with bouts of crying 
and does not take a bottle  anymore.
At age 3 months the baby is seen by GI and already the weight gain has  
dropped.  If I recall correctly the baby weighed 7-0 at 2 months but only  gained 4 
ounces in the next 4 weeks.  The GI doctor states the baby  has reflux based 
on history and advises Mom to cut dairy out of her diet,  breastfeed for 
longer periods, give Prilosec (Omeprazole), and specialty formula  (a higher 
calorie formula that starts with "p" just can't remember it).   Since the baby won't 
take a bottle the only way the mother is able to give the  formula is by 
spoon.
Meanwhile this family is being followed by Early Intervention and they are  
the ones who called me in on this case but not until the baby was 7 months  
old.  At 7 months the baby's weight is 12 pounds.  The case worker  states that 
the baby's tongue is always sticking out.
Solids have been introduced to the baby by recommendation of the GI  doctor.
I am a member of a feeding team at the hospital I work at and this includes  
a nutritionist, PT and a speech therapist.  I got a referral for this baby  to 
be seen by our team but sadly this had to be 3 weeks after the initial call I 
 got.
When we saw this now 8 month old baby girl she was happy most of the  time.  
Small and thin with drooping cheeks very low muscle tone.  Mom  would 
breastfeed her on demand but she was easily distracted so only nursed for  short 
stints.  During breastfeeding her tongue was obviously extended  beyond her lower 
lip and after she came off the breast her tongue remained out  for several 
minutes.  She is unable to sit up on her own and does not  tolerate being prone.  
When Mom tried to give her spoons of formula the baby does not open for the  
spoon and the contents tends to just roll back out of her other side of the  
mouth.  If she tried the bottle the baby bites it but then pushes it out of  
her mouth.  She does the same with a cup.  When given baby food,  mashed banana, 
she would made a face and not handle the different texture at  all. Mom 
states she does the same with cereal and the other baby  food she has tried.  I 
attempted a digital exam, she did bite some, never  sucked on my finger, her 
palate has a slight higher arch, and I never  found a gag reflect on her.  She did 
not tolerate me being in her mouth for  very long.  Mom also complaining that 
the baby is sweating more and has a  foul smell.  She notes this when the 
baby has been sleeping.  We did  not note this at our visit.  We asked about 
getting a sweat test to rule  out CF but the GI doctor said he did not see this as 
a diagnosis.
I contacted the GI doctor, introducing myself and letting him know we are  
seeing this patient and asking in the future if he would contact me with  
breastfeeding babies.  He did allow me to be with him the next time he saw  this 
patient.  This was almost 2 weeks after we saw her.  Her weight  remains in less 
than 3rd percentile, her height is in the 25%, and her head  circumference is 
50%.  He was getting a urine specimen and blood test  because the last urine 
showed some metabolic problems but I do not know  what.  He tells the parents 
that they need to try other solids to see  if they can get her to take more 
food, continue her meds and have set them up to  see a Metabolic specialist in 
early Jan.  
She is getting more PT, at least twice a week now.  I am encouraging  the 
breastfeeding since this is the only thing the baby is really able to do for  
nourishment.  I have given the pediatrician and the GI doctor my  recommendations 
and emphasized that a diagnosis needs to be made before pushing  on getting 
this baby to gain weight.
Sorry for the length of this note.  Any ideas? I really feel  bad that all 
the appointments for this baby are so spread out and delaying  addressing the 
real problem.
Thanks,
Ann Perry, RN IBCLC
Boston, MA

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