[Dysphagia] infant aspiration problems

[ajw at physics.umn.edu (Andy Wettstein)]

[ Hopefully this is an appropriate place to post this ]

Hello

Our then 9 week old son had a breathing incident the day after 
thanksgiving where he breathed very abnormally and started turning 
blue.  We called 911 and took him to the hospital where he recovered 
on his own accord.  He had never shown any signs of problems respiratory
problems before that.  Occasionally during bottle feeds he would cry and
stop taking the bottle.  As we remember, he would not do that while
breastfeeding, and after we started following the bottle feeding
instructions described here http://www.ilca.org/pubs/jhl/j18h1l10.pdf, 
which let him control the flow of fluid we don't recall that happening 
either.

He was kept at the hospital to perform some tests to try and figure out
why he breathed abnormally.  He was given 3 MBS, one lying down, one
sitting upright, and one with different fluid thicknesses.  He aspirated
twice in 70 or so swallows in the first study and once after 20 or 30
swallows in the second study before they were discontinued.  After the
second study we were told not to feed him until the occupational
therepist could try different fluid thicknesses with him (this would
have been about 20 hours of fasting -- sunday morning through monday
morning when the occupational therepist would get in.  we fed him
expressed breast milk through the night anyway ) because of the 
risks involved with aspiration.  In the third study with the occupational 
therepist, she found a certain combination of nipple and formula thickened 
with rice where he had laryngeal penetration, but no aspiration.  

The did a chest xray at this hospital, too.  We were told then his chest
looked normal, but I have asked about it again and was told that someone
else evaluated it and said it looked like he had problems (this seems
common for us we hear 2 entirely different things from different people).  
He had just drank some formula before that xray, so I don't know if that 
affects it.

Anyway, we were sent home thickening formula.  We tried during the day to
feed him, but he probably was only able to suck about 4 oz of thickened
formula out of a bottle in over 12 hours.  So we went back to the
hospital.  This time a different one because we were really upset with
what had happened at the previous one.  

At this hospital the ER doctor reviewed the documentation for the
previous hospital stay and thought that the risks of feeding him 
orally were too great and that we should feed him through an NG tube.
So he was admitted and an NG tube was inserted.  In this hospital they
repeated the MBS and again found aspiration, although they did use
both thick-it and rice cereal during the study for thickening.  One 
week after the initial breathing episode we were now sent home to feed 
him through an NG tube, and they would repeat the MBS in 2 weeks (which 
was one week ago).  They again found aspiration during that study.  Also, 
the NG tube was not removed during the MBS at this hospital.

So it is now 3 weeks of feeding through an NG tube.  He is a very upset
baby and there is great stress in our household (did I mention he has a
twin sister?).  We have told our clinic that we need to find a better
solution, but they don't listen.  They say the risk of pneumonia because
of aspiration observed during the MBS is too great to try anything else.  

Now, I read over the archives of this email and see some extremely
different opinions on the benefits of thickened fluids and MBS as a
diagnostic tool for aspiration.  

So I guess we are looking for fresh thoughts on his situation.  
This has really turned into a nightmare for us, we haven't heard any
advice that we really trust.  The hospitals/clinics just keep repeating 
the same things to us even though we tell them this isn't working out 
for us.  And we indeed had our doubts about the MBS even before reading 
more about it.  Each time at the hospital it had been >5 hours for him 
to eat and he was very stressed out.   The last one it had been about 
3 weeks since he had sucked anything out of a bottle.

I think that covers most of what has happened.

If anyone can offer advice we would appreciate it.  We live in the
Minneapolis/St. Paul metro, if anyone knows anyone around here that we
could talk to that would be great, too.

Thanks for listening
Andy