I'm behind on Lactnet so pardon me if someone has already shared
similar thoughts.

My strongest thought is that despite the aspiration/dysphagia,
breastfeeding seems to be working in the most fundamental way for
this baby.  HE WANTS TO NURSE.  He, better than anyone, knows how it
feels when he gets milk into the wrong places -- and still he is
literally crying out for the breast.  The fact that he has been
pretty much healthy so far (ie, no pneumonia) tells us that the
breastmilk getting in the wrong places isn't hurting him.

Feeding him very thick formula-cereal mixtures, on the other hand,
may very well hurt him.  It certainly isn't doing the mother-baby
relationship any good either.

Perhaps they can experiment with different nursing positions to
minimize the aspiration.  It seems that having the baby in an upright
position would be helpful.  A six-month-old can sit upright astride
mom's leg to nurse, or lie across mom's abdomen when she is on her
back.

I think above all the mom needs to be empowered/encouraged to repeat
to all involved how important breastfeeding is to her and her baby,
and how much she wants to find a way to continue.

As the mother of a similar-aged boy, my heart breaks to think of this
little one and his mom both aching to snuggle in close and nurse.

Warmly,
Margaret
mom of 2, LLLL
Longmont, Colorado

>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
>

             ***********************************************
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html