Hello, my name is Christy Pate.  I am an LC and occupational therapist in
the Kansas City area.   I am working with a 5 month old baby (as an OT) with
Down syndrome.  He started at breast but due to CHF, was unable to
breastfeed successfully.  As his condition worsened, his oral feeding
abilities deteriorated as well.  He developed a profound oral aversion,
which I have luckily been able to resolve, but which is still fragile.  He
is receiving breastmilk by NG and is NPO, but is not medically NPO.  

He had surgery 10 days ago and is home and stable.  Full therapy is OKd as
well as oral feeding as tolerated.  Oral feeding is not going well!!  He is
interested in breast and bottle and pacifier, but no longer has any idea how
to suck or swallow.  In fact, I do not think he can swallow safely, as I
noted many signs of aspiration during feeding (breast and bottle) and I am
only able to recommend therapeutic feeds at this point. 

Mom has breastfed 3 other children, and has very high hopes of returning to
normal breastfeeding.   I don't know if "normal" is possible, but I am not
giving up the hope.  We have a very long way to go just working on the oral
motor skills necessary to return to full oral feeding. 

Mom has been pumping all this time.  She has three other children, a
husband, a home and a special needs child to care for.  She is exhausted!
She feels like it might be time to quit pumping, but knows the benefits of
her baby receiving breastmilk.   Everytime she pumps, she is reminded of
what she is not doing.  She would like to talk to another mom who has been
through a similar situation.  If you have worked with anyone or know of
anyone who has been through this sort of thing, please contact her for
permission to give out her name and email.  If you contact me personally, I
will try to put them in touch.

Thank you!
Christy Pate OTR, IBCLC
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