The mom described here gave her permission for me to post to the list and is
desperate for any help or words of wisdom you can offer her.

I work as a hospital based LC. Yesterday I received a call from a mom whose
baby was just diagnosed with pediatric dysphagia. He is six months old and
has been having symptoms for the past three months. The symptoms were at
first diagnosed as asthma, but that turned out not to be the case.
Apparently he aspirates every time he tries to swallow, and that has caused
him to be in a state of chronic congestion with wheezing and a cough. This
past week his O2 saturation dropped into the low 90's and he had to be
hospitalized. The fact that he was exclusively breastfed has so far kept him
from developing pneumonia, but that fact also apparently kept his condition
from being correctly diagnosed at first.
At the hospital they made the mom give him formula immediately, mixed with
rice cereal. It took 1 tablespoon rice cereal per ounce of abm before the
mixture was thick enough to allow him to swallow without aspirating. The
baby has had very few bottles in his life, but would take an Avent teat.
However, a speech therapist who is involved in his planning says he needs a
teat with a narrow base and recommended the Nuk. I am not clear on all of
the facts, but I believe that there are issues involving the muscle strength
of his lips and his sucking ability. It sounds like feeding him has become a
nightmare. The mom says she has to work his jaws with her fingers throughout
the feeding just to make him take the milk/cereal mixture.
The mom is understandably very upset, and the poor baby cries constantly,
wanting to nurse. Mom tried pumping and nursing on an "empty" breast, but
says she had such a strong letdown that even after pumping seven oz she
leaked all down the front of her shirt. She is afraid to breastfeed because
of the aspiration. She tried mixing breast milk with cereal, but it will not
stay thick enough. She worked really hard through some initial difficulties
to breastfeed this baby, and planned to breastfeed for "at least a full
year". She is about to stop pumping because she thinks that the baby
smelling her milk makes it more difficult for him; she says she can hardly
hold him because he wants so badly to nurse. Any suggestions will be greatly
appreciated. (The mom will keep pumping her milk at least until we hear if
there are any suggestions from you that will help ease this difficult
situation). Thanks in advance for any ideas.
Anne Stiller, RNC, IBCLC

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