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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