Diane, my ex-husband's sister gave birth to a baby with arthrogryposis, in
1980, and did successfully breastfeed, for about 18 months.  This was before
I was very well educated about breastfeeding, but what I remember is that
the baby latched well right after birth, but then had a hard time latching
for a few days.  During that time, she recieved pumped milk in a bottle with
a premie nipple, as recommended by the physician.  After a few days of that
going, seemingly, OK, she started getting dehydrated.  The doctor thought
that her suck was too weak for the premie nipple.  However, her father
watched her sucking and could see that she was collapsing the nipple.  The
parents decided to try getting her back to the breast and see what happened,
before trying anything else with bottle nipples.  With a little help, Kim
was able to latch, and nursed just fine from there on out.  The fact that
her mom had a good milk supply, and active let-down and that her parents
already had a total of three years experience breastfeeding their first two
children certainly helped.

This is the only case of arthrogryposis I know anything about, but I think
it is a good example of the fact that it is possible for such a baby to
breastfeed.  Kim's case is quite severe, and the joint and muscular problems
are very widespread.  Her face muscles were affected enough that it made it
more difficult for her to learn to speak, and it took her several years to
learn to smile.  Yet, she breastfed exclusively for most of her first year,
and her growth and overall health was excellent.  As far as your client
whose baby has been diagnosed prenatally, I think it is important for her to
take a positive approach, and avoid fear that could become a self-fulfilled
prophecy.  Hopefully just knowing about one success case will be helpful!
Also, while I don't know of any other cases of arthrogryposis, I know of
many, many cases where babies, who supposedly could not nurse, did, with
enough persistance, patience and creativity, on the part of the mother.

I have not been in touch with my former SIL in several years, but I am sure
that she would be happy to speak to this mother on the phone, or through
e-mail.  If you would like to give the mother my e-mail address, I would be
happy to put her in touch!  It might be helpful to her in lots of ways, to
speak to a mother who has raised a child with arthropryposis to adulthood.
Kim is 23 now, and an inspiration!  She has some physical limitations, but
has not let that stop her from living a productive, fulfilling, life.

Best Wishes,
Darillyn
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