Howdy,
I saw a baby yesterday that I am very concerned about. I would appreciate
your collective wisdom in managing this situation. This is baby #4 and all
others were breastfed for one year, gained well and thrived. This baby is
below birthweight at 6 weeks. All of the babies were born at home with a
midwife. Baby was 8# 10 oz at birth- he was weighed twice because they
thought he should weigh more (big baby). The baby was seen at two weeks by
a family medicine physician for a well baby check up, he weighed 8# 12 oz,
and was nursing well and no concern was mentioned to the parents about
weight gain and no follow up requested.  At six weeks they saw the same
family doc for possible hip dysplasia, his hips "pop", he weighed 9#4 oz
and no concern was made of his weight, but a referral was made to a
pediatrician for hip follow-up. He was seen by the pediatrician 4 days
later and weighed 8# 8oz on the pedi's scales, his hips are fine and the
pediatrtion watched him nurse and suggested they bring him back for a
weight check in a week, no other follow-up was requested. I was contacted
because the mother was unsure of how to proceed and wondered what she
should eat to make her milk richer. After a long phone conversation, I felt
the baby needed to be seen and evaluated more thoroughly. I saw him and was
appalled by his appearance. He was very thin, very white skinned with
little red blotches. His skin was baggy on his legs. Both of his parents
thought he looked really good- good color etc. His eyes were wide and sad
looking, he did not make much eye contact. His neck was flexed back firmly
like a hypotonic baby, but the rest of his body was rag doll like. His
parents said he had done that since birth. His mouth was open wide and he
was breathing very loudly through his mouth. He had a fairly tight frenulum
and his tongue retracted when he cried. He had a very high arched palate
and a very receded chin. I checked his suck and he was able to pull my
finger back and suck appropriately for a short time and then lost interest.
My finger was very awkward in his mouth and it didn't seem to fill up all
of the spaces as most babies do. His mouth was dry and his lips were dry.
His skin was not tenting and his fontanel was normal. He cried off and on
and seemed to be in great discomfort/pain. His breathing with head tipped
back and mouth opened seemed to be an effort to maximize his airway. His
breaths were noisy and raspy at times, he seemed to have some nasal or
upper throat congestion, but no mucous was observed. At times he would look
like he was going to gag or cough and nothing would happen, but he would
hold his breath at those times.  I held him in a colic hold with his head
slightly down and patted his back and he seemed to relax, but did not cough
or drip. Pre-feed he weighed 8# 6oz with clothes on. I really think he is
continuing to lose weight. He is fed on demand, wakes every two-three
hours, nurses well according to mom. He sleeps with his parents or in a
cradle for part of the night. They have been waking him twice the past
couple of nights because they were concerned about his weight and wanted
him to have those night feeds. He latched on quickly, but had his bottom
lip under, I pulled it out and distracted him, he pulled off and cried for
quite a while and would not go back on the breast, Mom changed him, his
bottom is scalded looking, very red angry rash. There were some satellite
lesions and I suspected there might be some thrush. His poop was Kelly
green and thin with a moderate quantity. His parents said they have been
that color since birth. Never yellow, never seedy. They reported that he
always stools as soon as he eats. He was calmed and then offered the breast
again. He had not fed in a couple of hours, but had been wakened from his
nap to come see me. Mom said he was very tired and didn't nurse well when
he wanted to sleep. He had a rough time latching onto the breast, but then
quieted and nursed well. Mom had three observed letdowns on one side and
two on the other. He nursed on the first side for about 10 minutes and then
on the second for 20-30 while we talked. We weighed him and he took 1.3
ounces. I was surprised by the low intake because he did a lot of
swallowing and mom seemed to have a very good supply. She said she can
squirt it across the room and leaks. While we weighed him he had a stool.
We weighed the diaper and calculated a stool weight of .4 oz. I calculated
intake based on that and felt that he was not taking enough in a day. He
also has an inguinal hernia and is uncomfortable with that at times. The
midwife was initially concerned about possible Down's Syndrome because he
has small, flat, low set ears and a Simian crease on his palm. Dad reports
having the same crease and showed me, he said one of their other children
had this also and another has identical ears to the baby and none have had
any health problems except a brother who had hypospadias which was
corrected with surgery. I was amazed that the doctors were not concerned
about this baby, I recommended follow-up and suspect he needs to be
hospitalized. His breathing difficulties were disturbing, he would also get
blue around the mouth, but not his lips. His nail beds were pink and his
toes were white. I was not able to evaluate capillary refill because they
didn't fill. On his fingers refill was slower than 3 seconds. His feet were
cool to the touch, but his hands were warm. His mother was unsure how often
he pees because his diapers all have the bright green poop. I suggested
that they return to the pediatrician and share my concerns. I was blunt
about telling them that this was very scary and at a minimum they needed to
feed the baby more. Mother thought she could express milk and supplement
with a bottle. They were open to using formula or anything I suggested. I
didn't feel an SNS would be helpful because of his breathing difficulties
and the apparent good flow at the breast currently. I am perplexed- could
it be a metabolic problem, cardiac, respiratory, genetic, oral motor,
anatomic, gastrointestinal, poor intake or poor utilization? I would
appreciate any suggestions in terms  of where to direct this mother and
baby. I'm sorry this is so long. Thanks, Cathy Liles

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