Hi all 
I need some help and I need to vent.  The family involved wants any info
and suggestions and know I am asking you all.  2 ½ weeks ago this mum
came to see me at the breastfeeding clinic for thrush with her 6 month
old.  He was born at about 5 ½ lbs and that day he weighed 9lbs at 6
months.  The baby had been hospitalized 2 weeks earlier for 5 days for
Para influenza virus.  During the hospital stay mum explained that baby
was observed but no specialized saw the baby and everyone was puzzled as
the baby had no fever only very severe respiratory difficulties, sternal
in-drawing, abundant secretions, coughing.  Exclusive breastfeeding
continued.  When I saw little Zachary he was pale, having very hard time
breathing, wheezing, in-drawing and had those eyes that are asking for
help.  He had mild thrush as mum had already started treating him in
hospital with GV a week and a bit earlier, but it was coming back and so
were her symptoms.  Mum states that Zachary had been doing well for the
first 6 weeks to 2 months with good weight gain (about 8 lbs by then)
and after his vaccine the trouble seemed to have started.  He caught a
cold, he has 2 brothers who had one but Zachary just couldn’t get rid of
it.  I luckily work with family med docs and they were very concerned.
We called the Respiratory Specialist at the children’s hospital and
arranged for them to be seen.  I also booked them for a follow up with
us.  Next visit with me, she told me she had seen her own paed who still
said it is just taking a long time to recover from the PI virus but was
in agreement that she see the respiratory specialist.  Noone seems to
understand why he isn’t getting better.  Many tests were done and he is
being followed.  He had lost weight 2oz from last week and seemed worse
not better.  Our Family Med Resident suggested they return to the
emergency and she called the specialist herself. All this time Zachary
is peeing and stooling within our upper normal limits and is being
breastfed now with a little cereal this past week only on paeds
suggestion.  We gave the family a list of what tests we think should
have been done to confirm with the specialist and they returned to
emergency and met again with the specialist.  This time totally not
understanding why Zachary is not improving the specialist asked
immunology to see him and they did other tests. Monday morning I saw the
family in my office, Zachary was breathing a little better with the
ventolin and flovent that had been prescribed.  He was full of thrush
and mum stated he hadn’t been interested in eating and was back to
exclusive breastfeeding for the past 5 days and was concerned about his
weight.  He had put on 2 ½ oz in 5 days great.  But deep down I had this
gut feeling there was something very wrong with this baby.  In my mind
breastfed babies usually recover very quickly when they have been sick
and this was not the case with Zachary.  There had to be something.  The
parents said the hospital should have the results of the tests he had on
Wednesday past and the resident called for the results.  It is BAD.
Zachary has almost no T-cells, plenty of B-cells.  Breastfeeding is
basically keeping him alive.  He needs a bone marrow transplant.  Now I
spoke to the nutritionist this morning and we have to work out a way to
increase calories and proteins with this baby.  I know I have seen
recently info about adjusting breastmilk with premies but I can’t think
clearly today in a hurry to find it in the archives.  I think it was
possible to pump and skim of the fatty milk and when baby goes to the
breast reintroduce it with the lactation device at the beginning of the
feed. Please anyone that has suggestions or has experienced anything
like this let me know ASAP. 
 
Carole Dobrich, RN, IBCLC
Aussie in Montreal  
       

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